Supporting a Friend Who has a Chronic/Life Threatening Condition
It can be difficult to know how to be supportive of a friend who has been diagnosed with a very serious chronic or life threatening condition.
How You Can Help
• Drive them to and from medical appointments
• Visit them in the hospital
• Watch their children, pick them up from school, have them visit you for the weekend
• Clean their house, take out the garbage, and offer to do other chores-particularly the seasonal ones that they may have neither the energy nor time to do
• Help take care of pets
• Make a meal, grocery shop
• Do something that is “normal” that doesn’t have anything to do with their illness, such as seeing a movie, going to a museum or concert.
• Tell them you are sorry
• Validate feelings
• Respect how they choose to manage their disease
• Offer advice only when asked
• Learn about their condition
• Listen, listen, listen
• Call and see how they are doing
• Laugh
• Talk about what they want to talk about
Things to avoid saying
• Everything’s going to be all right
• Don’t worry, feel sad or feel guilty
• Think of the good times
• I know how you feel
If you accompany them to a medical appointment, be a friend with a pen
• Before the visit, ask the friend what concerns or questions they might have. Write them down. Suggest that if they forget to ask the questions, you could either remind them, or state the questions yourself. Only ask questions if your friend has given you permission.
• Find out before going in the office if your friend is comfortable with you being there during a physical exam.
• Take notes about what the medical provider is saying, and how they are responding to your patient’s questions. Be objective. Write what the care provider is saying, not what you or your friend want to hear.
• Keep quiet during the visit, only making a comment if you think something is not clear to your friend, or to ask a question that your friend may have forgotten.
• After the visit, your friend may not want to discuss what the doctor said. Don’t push it. Wait a few days and then see if they are able to discuss what happened.
• Your perception of what the provider said, and your friends may be completely different. It doesn’t mean that either of you are right or wrong.
• Give your notes to your friend and go over them when you both have time to discuss the visit. Understand that your friend’s priorities may be different than yours or the doctors. Respect the choices they are making.
• Do not discuss the visit with others, including family members, unless your friend has given you permission to do so.
Resources
• When a Friend Has a Chronic Illness from the American RSDHope Group:
• How to Help a Loved One with Chronic Illness
• 27 Ways to Comfort a Sick Friend
Showing posts sorted by relevance for query Friend with a pen. Sort by date Show all posts
Showing posts sorted by relevance for query Friend with a pen. Sort by date Show all posts
Monday, October 26, 2009
Saturday, August 6, 2011
Organizing Community to Aid Those affected by aging, illness and/or injury
This post is dedicated to Bev, who has helped to keep so many of us in the Old Time music community connected over the years, first using letters and then e-mails.
With the graying of the “baby boom” generation, as well as once terminal diseases now treatable as chronic conditions, the need for communities to organize to support those who are ill, injured or aging is paramount. While it is up to the person dealing with such issues, and their families, to make choices about the care they receive, this can be emotionally, physically and financially overwhelming. Further, insurance covers some things and not others. In today’s economy, most adults are working, including many who in past generations would have been retirees. Women, once the primary caregiver in their families, are now an established part of the workforce and it’s not as easy for them to stop and be a full time caregiver.
In generations past, community would take care of one another, as there were no such things as social service agencies, community action groups etc. We have evolved into a society that believes we should “let the experts do it.” Unfortunately, many of the organizations that were designed to help with such needs are folding, can’t keep up with the demand and not infrequently tell potential clients, “while you qualify for services, you’ll be on a waiting list.”
The good news is that we have tools at our hand that past generations didn’t have, which can make it much easier to organize and help one another. People do best when they feel they are needed, so volunteers will come forward if they know how to sign up, there isn’t a lot of “red tape” involved in becoming a volunteer, they are not overwhelmed with responsibility and believe that what they are doing makes a difference.
While we may not have the community skill sets that our forefathers had, we can learn and we have quicker ways of doing so thanks to things like the internet, television and continuing education.
Community can be defined in a number of different ways. It can be a distinct neighborhood in a large city, a rural town, a suburb, an apartment complex, senior housing, or even a network of friends. However, the end result is the same-a group of people who are connected and wish to remain that way regardless of injury, illness or age.
Below are six basic elements that help people heal and maintain their health. The more a community (as you define it) can organize around these components, not only will it reduce the overall cost of care, but it significantly increases the chances the person will remain part of the community.
How you use this information will very by where you live, how you define community, and what resources already exist. You can read this post from the viewpoint of what you can do as an individual to help your community, or use it as a way to begin a community discussion.
Keep in mind that if you want to see things change, it starts with you. This post is a place to begin the discussion about the needs of those who are aging or have a chronic and/or life threatening and how community can help. Keep it going by posting your ideas, suggestions or things you are doing in this regard to this blog and/or to the Healing Whole Facebook page.
This is a work in progress, and I will be happy to update this periodically.
Organized support. The two questions that people ask when they learn that someone has been injured or newly diagnosed are “How are they,” and “What can I do to help?” To both these questions, the simplest approach is that a good friend and/or family member(s) establish a Lotsa Caring Hands website. This is a private, web-based caregiving coordination service that allows family, friends, neighbors, and colleagues to create a community to assist a family caregiver with the daily tasks that become a challenge during times of medical crisis, caregiver exhaustion, or when caring for an elderly parent .Each community includes an intuitive group calendar for scheduling tasks such as meals delivery and rides, a platform for securely sharing vital medical, financial, and legal information with designated family members, and customizable sections for posting photos, well wishes, blogs, journals, and messages. This is a free service and does not take long to establish. Further, people who do not use the web can be paired with those that do, so that their services are included.
Even if a person lives in another town, this is still a good way for them to understand what is going on and what they can do to provide support-e.g. send gas cards to people who are signed up to do a lot of the driving, arrange for a weekend away for the primary care givers. For other ideas see How to Respond When Someone is Ill or Injured.
It is now possible for community organizations, such as churches, civic clubs, schools and social groups to establish a Lotsa Helping Hands page to coordinate volunteers to help those in their specific communities who might be in need. Many communities now have listservs and on-line bulletin boards, which can help connect volunteers to those who have specific requests, such as rides to a medical appointment. If your community doesn’t have something like this yet, try starting a free Facebook Community Wall.
Information: There are two types of information that people need. The first is resources in their community, county and state that are available to help them. Providing it in a handout form, with a more detailed website, blog and/or Facebook page will make it possible for more people to access it. Places where people gather, such as churches, civic groups, chambers of commerce, town and city offices, schools, libraries, hair salons, and office buildings should be made aware of web activities and have handouts available. While most states now have 2-1-1, the information and referral service helpline, there are often community based services they may not be aware of. Use the template of the “Getting What You Need Checklist,” tailor it to meet the needs of your community. Check out “Getting What You Need Checklist: Cavendish edition,” to see how one community has adopted it.
The second area is health information. While the internet is a wonderful resource tool, there is a lot of misinformation, outdated materials and sites that are nothing more than snake oil. In fact, health scamming escalates when it’s a chronic and/or life threatening condition. Helping people find the correct health information in a format they can understand can make a world of difference in how they will deal with their health issues.
Having worked on a librarian outreach project for several years, I know that people turn to their friendly librarian over other community resources, including the local health center or hospital, for both health and community information. In fact, there is at least one graduate school, which offers a combined MLS (masters of Library Science) and MSW (masters of Social Work) degree.
Libraries can increase their responsiveness by:
• Weeding health related books on a yearly basis. Ask your local health center, or someone similar, to do this for you. Also ask them to provide recommendations, extra copies of material etc. Do not believe that more is better and leave out of date books on the shelf as it can be hazardous.
• Book marking appropriate medical sites on patron computers, including e-patient sites. Again, talk to your local medical provider about their recommendations.
• Contacting local chapters of national health organizations (e.g. American Cancer Society) and obtaining current materials, which are generally free.
Places of worship, salon/barber, bar/pub, place of employment are others place where people turn for help and information. There is no need to reinvent the wheel if the library is already doing a good job in providing health information and there is a good resource handout that all can use. However, since people will gravitate to free computers, identify where those are in your community, and bookmark where possible.
Personal health journal. This can be done on-line, or in print. This is recommended for three reasons:
• There is a growing e-patient movement, whereby people with similar diagnoses share information about their condition as a means to better understand what treatments and approaches might be helpful for their condition.
• It helps the person and caregiver keep track of who the providers are, what meds are being taken, what they might be allergic to, what’s been tried etc. This is a very helpful tool in situations where several family members may be providing care for an individual, such as elderly parent. This way, everyone that needs to know what’s going on (e.g. who the doctors are, latest lab work, medications etc.) is kept informed.
• Even with the move toward “paperless offices,” information isn’t always available during office visits, and doesn’t always transfer when you visit a different practitioner.
Having designed a print “Health Notebook,” we found that the highest users were caregivers. People experiencing a health crisis were also more likely to use one, but again they would ask their advocate and/or family member to fill it out for them.
Communities can assist in the process by providing training on use of a personal health journal in print or on line.
Learn More
Managing Health Information Online: Yours/Theirs
Being an e-Patient: Social Networking for Health
Advocacy: The health care system is a maze that many become so confused by, they don’t get the care they need. Further, medical appointments can be traumatic and it’s very helpful to have an unbiased person taking notes and reviewing them after appointments. A “friend with a pen” can make for a much better visit.
Some condition specific organizations provide advocates, so that is a good place to start. A community may want to develop its own set of advocates and/or train family and friends how to do this.
Learn More
• Health Advocate-Who, What, When and Where
• How to be a “friend with a pen.”
Support Group: Study after study shows that people who participate in support groups do better. Today, with the availability of the internet, on-line support is available 24/7. This is also the dawning of the e-patient age, where patients are actively involved in helping to study what works and what doesn’t.
Communities can help by providing resource information about locally occurring support groups, links to the local chapter of national organizations (e.g. American Heart Association) and being willing to offer free space where such groups can meet.
Learn More
Being an e-Patient: Social Networking for Health
Finding Support on-line
National condition specific organizations
Well Being: In 2008, nef (the new economics foundation ) was commissioned by the UK Government’s Foresight Project on Mental Capital and Well-being to identify a set of evidence-based actions to improve well-being, which individuals would be encouraged to build into their daily lives. In reading the Five Ways to Well Being below, assess how well you and your community enables its members to achieve these and what can be done to improve opportunities to increase well being for all.
Connect: Connect with the people around you. With family, friends, colleagues and neighbours. At home, work, school or in your local community. Think of these as the cornerstones of your life and invest time in developing them. Building these connections will support and enrich you every day.
• Are there places in your community where people can gather such as parks, playgrounds, cafes? Are they handicap accessible? Are these places inclusive, where everyone is welcome or are they restricted in some way?
Be active: Go for a walk or run. Step outside. Cycle. Play a game. Garden. Dance. Exercising makes you feel good. Most importantly, discover a physical activity you enjoy and one that suits your level of mobility and fitness.
• Are there places in your community where people can walk, ride bikes and engage in other outdoor exercise? Are they handicap accessible. Does your community offer community and school vegetable gardens? What about sliding scale fees for fitness and well-being classes (Bone Builders, yoga, mindfulness) and/or gym memberships?
Take Notice: Be curious. Catch sight of the beautiful. Remark on the unusual. Notice the changing seasons. Savor the moment, whether you are walking to work, eating lunch or talking to friends. Be aware of the world around you and what you are feeling. Reflecting on your experiences will help you appreciate what matters to you.
• Does your community offer seasonal events, such as harvest festivals in the fall, or a holiday bazaar? Are these events handicap accessible? Does everyone in the community feel welcome?
Keep Learning: Try something new. Rediscover an old interest. Sign up for that course. Take on a different responsibility at work. Fix a bike. Learn to play an instrument or how to cook your favorite food. Set a challenge you will enjoy achieving. Learning new things will make you more confident as well as being fun.
• Are adult learning opportunities available in your community, or in a neighboring one? Do people take advantage of them? If not, why not? Does you community have a time banking system, where in exchange for your time and ideas, someone can teach you how to do something? Are there community theater, art programs and other such activities available that anyone can participate in? Are these opportunities available to all?
Give: Do something nice for a friend, or a stranger. Thank someone. Smile. Volunteer your time. Join a community group. Look out, as well as in Seeing yourself, and your happiness, linked to the wider community can be incredibly rewarding and creates connections with the people around you.
• Is there an easy way for people to volunteer in your community? Are new people made to feel welcome as volunteers? Are there a variety of ways people can participate regardless of age, gender and abilities?
Learn More
Healing the Whole Person: Ways to Increase Well-Being
Additional Resources
Aging in Place
Caregiver Resources
There are also a variety of topics that have been highlighted on the right hand side of the Healing Whole Blog
With the graying of the “baby boom” generation, as well as once terminal diseases now treatable as chronic conditions, the need for communities to organize to support those who are ill, injured or aging is paramount. While it is up to the person dealing with such issues, and their families, to make choices about the care they receive, this can be emotionally, physically and financially overwhelming. Further, insurance covers some things and not others. In today’s economy, most adults are working, including many who in past generations would have been retirees. Women, once the primary caregiver in their families, are now an established part of the workforce and it’s not as easy for them to stop and be a full time caregiver.
In generations past, community would take care of one another, as there were no such things as social service agencies, community action groups etc. We have evolved into a society that believes we should “let the experts do it.” Unfortunately, many of the organizations that were designed to help with such needs are folding, can’t keep up with the demand and not infrequently tell potential clients, “while you qualify for services, you’ll be on a waiting list.”
The good news is that we have tools at our hand that past generations didn’t have, which can make it much easier to organize and help one another. People do best when they feel they are needed, so volunteers will come forward if they know how to sign up, there isn’t a lot of “red tape” involved in becoming a volunteer, they are not overwhelmed with responsibility and believe that what they are doing makes a difference.
While we may not have the community skill sets that our forefathers had, we can learn and we have quicker ways of doing so thanks to things like the internet, television and continuing education.
Community can be defined in a number of different ways. It can be a distinct neighborhood in a large city, a rural town, a suburb, an apartment complex, senior housing, or even a network of friends. However, the end result is the same-a group of people who are connected and wish to remain that way regardless of injury, illness or age.
Below are six basic elements that help people heal and maintain their health. The more a community (as you define it) can organize around these components, not only will it reduce the overall cost of care, but it significantly increases the chances the person will remain part of the community.
How you use this information will very by where you live, how you define community, and what resources already exist. You can read this post from the viewpoint of what you can do as an individual to help your community, or use it as a way to begin a community discussion.
Keep in mind that if you want to see things change, it starts with you. This post is a place to begin the discussion about the needs of those who are aging or have a chronic and/or life threatening and how community can help. Keep it going by posting your ideas, suggestions or things you are doing in this regard to this blog and/or to the Healing Whole Facebook page.
This is a work in progress, and I will be happy to update this periodically.
Organized support. The two questions that people ask when they learn that someone has been injured or newly diagnosed are “How are they,” and “What can I do to help?” To both these questions, the simplest approach is that a good friend and/or family member(s) establish a Lotsa Caring Hands website. This is a private, web-based caregiving coordination service that allows family, friends, neighbors, and colleagues to create a community to assist a family caregiver with the daily tasks that become a challenge during times of medical crisis, caregiver exhaustion, or when caring for an elderly parent .Each community includes an intuitive group calendar for scheduling tasks such as meals delivery and rides, a platform for securely sharing vital medical, financial, and legal information with designated family members, and customizable sections for posting photos, well wishes, blogs, journals, and messages. This is a free service and does not take long to establish. Further, people who do not use the web can be paired with those that do, so that their services are included.
Even if a person lives in another town, this is still a good way for them to understand what is going on and what they can do to provide support-e.g. send gas cards to people who are signed up to do a lot of the driving, arrange for a weekend away for the primary care givers. For other ideas see How to Respond When Someone is Ill or Injured.
It is now possible for community organizations, such as churches, civic clubs, schools and social groups to establish a Lotsa Helping Hands page to coordinate volunteers to help those in their specific communities who might be in need. Many communities now have listservs and on-line bulletin boards, which can help connect volunteers to those who have specific requests, such as rides to a medical appointment. If your community doesn’t have something like this yet, try starting a free Facebook Community Wall.
Information: There are two types of information that people need. The first is resources in their community, county and state that are available to help them. Providing it in a handout form, with a more detailed website, blog and/or Facebook page will make it possible for more people to access it. Places where people gather, such as churches, civic groups, chambers of commerce, town and city offices, schools, libraries, hair salons, and office buildings should be made aware of web activities and have handouts available. While most states now have 2-1-1, the information and referral service helpline, there are often community based services they may not be aware of. Use the template of the “Getting What You Need Checklist,” tailor it to meet the needs of your community. Check out “Getting What You Need Checklist: Cavendish edition,” to see how one community has adopted it.
The second area is health information. While the internet is a wonderful resource tool, there is a lot of misinformation, outdated materials and sites that are nothing more than snake oil. In fact, health scamming escalates when it’s a chronic and/or life threatening condition. Helping people find the correct health information in a format they can understand can make a world of difference in how they will deal with their health issues.
Having worked on a librarian outreach project for several years, I know that people turn to their friendly librarian over other community resources, including the local health center or hospital, for both health and community information. In fact, there is at least one graduate school, which offers a combined MLS (masters of Library Science) and MSW (masters of Social Work) degree.
Libraries can increase their responsiveness by:
• Weeding health related books on a yearly basis. Ask your local health center, or someone similar, to do this for you. Also ask them to provide recommendations, extra copies of material etc. Do not believe that more is better and leave out of date books on the shelf as it can be hazardous.
• Book marking appropriate medical sites on patron computers, including e-patient sites. Again, talk to your local medical provider about their recommendations.
• Contacting local chapters of national health organizations (e.g. American Cancer Society) and obtaining current materials, which are generally free.
Places of worship, salon/barber, bar/pub, place of employment are others place where people turn for help and information. There is no need to reinvent the wheel if the library is already doing a good job in providing health information and there is a good resource handout that all can use. However, since people will gravitate to free computers, identify where those are in your community, and bookmark where possible.
Personal health journal. This can be done on-line, or in print. This is recommended for three reasons:
• There is a growing e-patient movement, whereby people with similar diagnoses share information about their condition as a means to better understand what treatments and approaches might be helpful for their condition.
• It helps the person and caregiver keep track of who the providers are, what meds are being taken, what they might be allergic to, what’s been tried etc. This is a very helpful tool in situations where several family members may be providing care for an individual, such as elderly parent. This way, everyone that needs to know what’s going on (e.g. who the doctors are, latest lab work, medications etc.) is kept informed.
• Even with the move toward “paperless offices,” information isn’t always available during office visits, and doesn’t always transfer when you visit a different practitioner.
Having designed a print “Health Notebook,” we found that the highest users were caregivers. People experiencing a health crisis were also more likely to use one, but again they would ask their advocate and/or family member to fill it out for them.
Communities can assist in the process by providing training on use of a personal health journal in print or on line.
Learn More
Managing Health Information Online: Yours/Theirs
Being an e-Patient: Social Networking for Health
Advocacy: The health care system is a maze that many become so confused by, they don’t get the care they need. Further, medical appointments can be traumatic and it’s very helpful to have an unbiased person taking notes and reviewing them after appointments. A “friend with a pen” can make for a much better visit.
Some condition specific organizations provide advocates, so that is a good place to start. A community may want to develop its own set of advocates and/or train family and friends how to do this.
Learn More
• Health Advocate-Who, What, When and Where
• How to be a “friend with a pen.”
Support Group: Study after study shows that people who participate in support groups do better. Today, with the availability of the internet, on-line support is available 24/7. This is also the dawning of the e-patient age, where patients are actively involved in helping to study what works and what doesn’t.
Communities can help by providing resource information about locally occurring support groups, links to the local chapter of national organizations (e.g. American Heart Association) and being willing to offer free space where such groups can meet.
Learn More
Being an e-Patient: Social Networking for Health
Finding Support on-line
National condition specific organizations
Well Being: In 2008, nef (the new economics foundation ) was commissioned by the UK Government’s Foresight Project on Mental Capital and Well-being to identify a set of evidence-based actions to improve well-being, which individuals would be encouraged to build into their daily lives. In reading the Five Ways to Well Being below, assess how well you and your community enables its members to achieve these and what can be done to improve opportunities to increase well being for all.
Connect: Connect with the people around you. With family, friends, colleagues and neighbours. At home, work, school or in your local community. Think of these as the cornerstones of your life and invest time in developing them. Building these connections will support and enrich you every day.
• Are there places in your community where people can gather such as parks, playgrounds, cafes? Are they handicap accessible? Are these places inclusive, where everyone is welcome or are they restricted in some way?
Be active: Go for a walk or run. Step outside. Cycle. Play a game. Garden. Dance. Exercising makes you feel good. Most importantly, discover a physical activity you enjoy and one that suits your level of mobility and fitness.
• Are there places in your community where people can walk, ride bikes and engage in other outdoor exercise? Are they handicap accessible. Does your community offer community and school vegetable gardens? What about sliding scale fees for fitness and well-being classes (Bone Builders, yoga, mindfulness) and/or gym memberships?
Take Notice: Be curious. Catch sight of the beautiful. Remark on the unusual. Notice the changing seasons. Savor the moment, whether you are walking to work, eating lunch or talking to friends. Be aware of the world around you and what you are feeling. Reflecting on your experiences will help you appreciate what matters to you.
• Does your community offer seasonal events, such as harvest festivals in the fall, or a holiday bazaar? Are these events handicap accessible? Does everyone in the community feel welcome?
Keep Learning: Try something new. Rediscover an old interest. Sign up for that course. Take on a different responsibility at work. Fix a bike. Learn to play an instrument or how to cook your favorite food. Set a challenge you will enjoy achieving. Learning new things will make you more confident as well as being fun.
• Are adult learning opportunities available in your community, or in a neighboring one? Do people take advantage of them? If not, why not? Does you community have a time banking system, where in exchange for your time and ideas, someone can teach you how to do something? Are there community theater, art programs and other such activities available that anyone can participate in? Are these opportunities available to all?
Give: Do something nice for a friend, or a stranger. Thank someone. Smile. Volunteer your time. Join a community group. Look out, as well as in Seeing yourself, and your happiness, linked to the wider community can be incredibly rewarding and creates connections with the people around you.
• Is there an easy way for people to volunteer in your community? Are new people made to feel welcome as volunteers? Are there a variety of ways people can participate regardless of age, gender and abilities?
Learn More
Healing the Whole Person: Ways to Increase Well-Being
Additional Resources
Aging in Place
Caregiver Resources
There are also a variety of topics that have been highlighted on the right hand side of the Healing Whole Blog
Saturday, July 10, 2010
“They don’t take care of themselves.”
This has not been an easy post to write, since it deals with some basic fears and concerns of those who are living with someone with a chronic condition. However, the issue of change has come up so much in the last month, I would have been remiss if I didn’t try to write about it.
So what do you do if you are partnered/married to someone with a chronic condition who refuses to take care of themselves?
The situation I’m describing is one where the person knows their diagnosis, has been told of the risk factors yet continues to engage in behaviors that are counterproductive to their health. This is not a situation where the person has dementia or some other problem that clouds judgment.
This is also not a situation where a person’s chronic condition has progressed to the terminal stage, where stopping smoking or eliminating the offending behavior isn’t going to make a bit of difference in outcome. Sadly, families and friends, who are stressed by the pending demise of someone they care about, do make caustic comments. This is also not part of today’s post.
Note: If they are endangering themselves by cutting, taking pills or some other highly destructive behavior, call a crises center or 911 immediately. It may be a “cry for help,” but people can die in these situations, so err on the side of caution.
Over the years I’ve heard many variations on the lack of self care -he/she wont keep their medical appointments; she still smokes even though she’s had a heart attack, is a diabetic or has/had cancer; he’s 100 lbs over weight if he’s an ounce and he had bypass surgery a year ago. The examples are endless.
These observations aren’t just made by family and friends, but also health providers, who do question at times whether they should be treating a patient who is unwilling to change.
Do any of these comments sound familiar?
• “He smokes and coughs like he is dying. I told him I’ve been a caregiver all my life and I don’t feel like seeing you die.”
• Responding to “I’m going to live my life as I want to and if I die, just bury me,” by saying, “that’s fine, if you want to die. Keep doing what you are doing and that is exactly what is going to happen. Better yet, maybe you won't die and you will have a stroke and have to live crippled and in a wheel chair the rest of your life.”
• Go together with your husband to see an attorney. Have him/her draft an advance medical directive (living will), a regular will and something for guardianship of your children (should you pass away as well). Then go together to visit an insurance agent and up your husband's life insurance policy. Then call a funeral home and price out the options he'd like, along with discussing arrangements for the service -- pallbearers, hymns, etc. Explain to your husband that since he seems intent on slowly committing suicide, the least he could do is get his affairs in order so that his eventual early death won't be a logistical nightmare on top of the emotional gut punch.
Do you think any of these spouses changed by hearing comments like this? Maybe, maybe not.
So how do you get them to give up unhealthy behaviors? This is a question that I have spent many hours exploring while doing HIV prevention. Without a doubt the most important thing to recognize is that you can’t change anyone. You can only change yourself.
You can change how you respond to them, which might impact their behavior. You can decide to stay with them or leave. You can figure out how much time and energy you have to spend on trying to motivate them to change. You can determine what type of impact of being a motivator is having on you and whether this is something you can sustain. At the end of the day, they get to choose whether they change or not.
Working in AIDS, we were constantly attending lectures on behavior change theory. What I came to believe was what I call the “law of substitutions”-people don’t change and sustain a behavior unless it can be substituted by one perceived to be of equal or greater value. Further, root issues need to be dealt with, often times before new behaviors can be introduced. A man is spending many hours a day in the sex clubs immediately following his partner’s death from AIDS. Teaching him safer sex techniques, no matter how erotic and enjoyable, isn’t going to change his behavior. However, grief/loss counseling and support just might slow him down. Over time, the combination of both interventions might sustain a long-term change.
Another example is a person who losses 100 lbs. They feel terrific, have a new social network and receive complements every which way they turn. Is this sufficient for them to maintain the weight loss? For some it certainly is, particularly if they are part of a program, such as Weight Watchers. For others, feelings of inadequacy, anger, fear or anxiety can take them back to known comfort behaviors of excess eating, particularly after people cease telling them how fabulous they look.
Motivating people to make changes in their life can be inspiring as well as discouraging. However, it’s one thing to do this as part of your job, it’s another if it’s your spouse/partner or close friend.
People living with chronic disease may be angry, frightened, feel vulnerable, chose to live in denial, or experience a host of other emotional responses. These are very real and difficult issues for them to deal with and shouldn’t be dismissed. These are often “root” issues and they may need help in addressing them before the unhealthy behavior can be eliminated or reduced. However, it’s still their issue. As much as you’d like to “kiss it and make it all better,” you can’t.
Encourage them to attend support groups, go to medical appointments with them, be the “friend with a pen,” learn as much as you can about the condition, and participate in caregiver support groups. However, feeling sorry for them, or making excuses for their behavior doesn’t help in the long run. It may just delay their getting on the right road to self-healing. Being a supportive spouse/partner or friend does not mean becoming a nag or turning your life upside down to the point that you’ve let their self destructive rule your life as well as theirs.
With that noted, here are some things to consider when trying to understand how to deal with someone that refuses to take appropriate care of themselves:
• Is there a possibility that the behavior you are seeing is a result of an underlying undiagnosed condition?
• Has the person been counseled by a medical provider? Do they participate in a support group or in some way discuss their problems with people, including medical and social service providers, who are familiar with their issues?
• Are there any behaviors on your part that are not supportive of your partner/spouse? For example, if they are being treated for high blood pressure, do you serve salty foods or have a saltshaker on the table? Do you say to them “you need to go for a walk 30 minutes a day” but don’t exercise yourself or offer to go for a walk with them? For a present, would you give them a two-pound box of chocolates knowing that they shouldn’t be eating it?
• Have you discussed your concerns with your spouse/partner? If yes, do they acknowledge there is a problem? Are they willing to work with you and/or a neutral third party to address them?
If your partner/spouse is unwilling to acknowledge there is an issue and/or doesn’t want to work on it, you’ll have to decide what impact this will have on you. Is it healthy for you to watch them self-destruct?
If you find you continue to stay with someone engaging in unhealthy behaviors, you need to start looking at your reasons for doing this. Does “caring” for someone at this level give you a sense of purpose? Is being in a relationship of any kind more important than not having one? Do you believe that you’ve invested so much time in the relationship you can’t imagine being without it? Are you financially dependent on your partner/spouse?
There are many instances of partners/spouses and even medical providers who finally just say, “I can’t do this anymore.” This isn’t necessarily a threat, but rather a decision not to be a party to destructive behavior. This is a critical wake up call for all involved. Sometimes the couples separate and they do better apart then together. Sadly, there are instances where the person doesn’t modify their behavior and they do end up dying or living a very compromised life. More optimistically, there are lots of cases where both parties make changes and the relationship grows.
If you do come to a place where you need to say, “I can’t be in a relationship with someone who is engaging in such self destructive behaviors,” and then don’t follow through when no change occurs, you are setting yourself up for a cycle that is going to make you both miserable. Don’t make this type of comment unless you know you can carry through with it.
Some take home points:
• The only behavior you can change is your own. By modifying yours, you may notice a change in your spouse/partner.
• If you can’t accept your partner/spouse the way they are, give them the distance you both need.
• It’s not how we think, feel or say, it’s what we do that matters.
• Ultimately it’s their life and their choice. It’s your life and your choice.
So what do you do if you are partnered/married to someone with a chronic condition who refuses to take care of themselves?
The situation I’m describing is one where the person knows their diagnosis, has been told of the risk factors yet continues to engage in behaviors that are counterproductive to their health. This is not a situation where the person has dementia or some other problem that clouds judgment.
This is also not a situation where a person’s chronic condition has progressed to the terminal stage, where stopping smoking or eliminating the offending behavior isn’t going to make a bit of difference in outcome. Sadly, families and friends, who are stressed by the pending demise of someone they care about, do make caustic comments. This is also not part of today’s post.
Note: If they are endangering themselves by cutting, taking pills or some other highly destructive behavior, call a crises center or 911 immediately. It may be a “cry for help,” but people can die in these situations, so err on the side of caution.
Over the years I’ve heard many variations on the lack of self care -he/she wont keep their medical appointments; she still smokes even though she’s had a heart attack, is a diabetic or has/had cancer; he’s 100 lbs over weight if he’s an ounce and he had bypass surgery a year ago. The examples are endless.
These observations aren’t just made by family and friends, but also health providers, who do question at times whether they should be treating a patient who is unwilling to change.
Do any of these comments sound familiar?
• “He smokes and coughs like he is dying. I told him I’ve been a caregiver all my life and I don’t feel like seeing you die.”
• Responding to “I’m going to live my life as I want to and if I die, just bury me,” by saying, “that’s fine, if you want to die. Keep doing what you are doing and that is exactly what is going to happen. Better yet, maybe you won't die and you will have a stroke and have to live crippled and in a wheel chair the rest of your life.”
• Go together with your husband to see an attorney. Have him/her draft an advance medical directive (living will), a regular will and something for guardianship of your children (should you pass away as well). Then go together to visit an insurance agent and up your husband's life insurance policy. Then call a funeral home and price out the options he'd like, along with discussing arrangements for the service -- pallbearers, hymns, etc. Explain to your husband that since he seems intent on slowly committing suicide, the least he could do is get his affairs in order so that his eventual early death won't be a logistical nightmare on top of the emotional gut punch.
Do you think any of these spouses changed by hearing comments like this? Maybe, maybe not.
So how do you get them to give up unhealthy behaviors? This is a question that I have spent many hours exploring while doing HIV prevention. Without a doubt the most important thing to recognize is that you can’t change anyone. You can only change yourself.
You can change how you respond to them, which might impact their behavior. You can decide to stay with them or leave. You can figure out how much time and energy you have to spend on trying to motivate them to change. You can determine what type of impact of being a motivator is having on you and whether this is something you can sustain. At the end of the day, they get to choose whether they change or not.
Working in AIDS, we were constantly attending lectures on behavior change theory. What I came to believe was what I call the “law of substitutions”-people don’t change and sustain a behavior unless it can be substituted by one perceived to be of equal or greater value. Further, root issues need to be dealt with, often times before new behaviors can be introduced. A man is spending many hours a day in the sex clubs immediately following his partner’s death from AIDS. Teaching him safer sex techniques, no matter how erotic and enjoyable, isn’t going to change his behavior. However, grief/loss counseling and support just might slow him down. Over time, the combination of both interventions might sustain a long-term change.
Another example is a person who losses 100 lbs. They feel terrific, have a new social network and receive complements every which way they turn. Is this sufficient for them to maintain the weight loss? For some it certainly is, particularly if they are part of a program, such as Weight Watchers. For others, feelings of inadequacy, anger, fear or anxiety can take them back to known comfort behaviors of excess eating, particularly after people cease telling them how fabulous they look.
Motivating people to make changes in their life can be inspiring as well as discouraging. However, it’s one thing to do this as part of your job, it’s another if it’s your spouse/partner or close friend.
People living with chronic disease may be angry, frightened, feel vulnerable, chose to live in denial, or experience a host of other emotional responses. These are very real and difficult issues for them to deal with and shouldn’t be dismissed. These are often “root” issues and they may need help in addressing them before the unhealthy behavior can be eliminated or reduced. However, it’s still their issue. As much as you’d like to “kiss it and make it all better,” you can’t.
Encourage them to attend support groups, go to medical appointments with them, be the “friend with a pen,” learn as much as you can about the condition, and participate in caregiver support groups. However, feeling sorry for them, or making excuses for their behavior doesn’t help in the long run. It may just delay their getting on the right road to self-healing. Being a supportive spouse/partner or friend does not mean becoming a nag or turning your life upside down to the point that you’ve let their self destructive rule your life as well as theirs.
With that noted, here are some things to consider when trying to understand how to deal with someone that refuses to take appropriate care of themselves:
• Is there a possibility that the behavior you are seeing is a result of an underlying undiagnosed condition?
• Has the person been counseled by a medical provider? Do they participate in a support group or in some way discuss their problems with people, including medical and social service providers, who are familiar with their issues?
• Are there any behaviors on your part that are not supportive of your partner/spouse? For example, if they are being treated for high blood pressure, do you serve salty foods or have a saltshaker on the table? Do you say to them “you need to go for a walk 30 minutes a day” but don’t exercise yourself or offer to go for a walk with them? For a present, would you give them a two-pound box of chocolates knowing that they shouldn’t be eating it?
• Have you discussed your concerns with your spouse/partner? If yes, do they acknowledge there is a problem? Are they willing to work with you and/or a neutral third party to address them?
If your partner/spouse is unwilling to acknowledge there is an issue and/or doesn’t want to work on it, you’ll have to decide what impact this will have on you. Is it healthy for you to watch them self-destruct?
If you find you continue to stay with someone engaging in unhealthy behaviors, you need to start looking at your reasons for doing this. Does “caring” for someone at this level give you a sense of purpose? Is being in a relationship of any kind more important than not having one? Do you believe that you’ve invested so much time in the relationship you can’t imagine being without it? Are you financially dependent on your partner/spouse?
There are many instances of partners/spouses and even medical providers who finally just say, “I can’t do this anymore.” This isn’t necessarily a threat, but rather a decision not to be a party to destructive behavior. This is a critical wake up call for all involved. Sometimes the couples separate and they do better apart then together. Sadly, there are instances where the person doesn’t modify their behavior and they do end up dying or living a very compromised life. More optimistically, there are lots of cases where both parties make changes and the relationship grows.
If you do come to a place where you need to say, “I can’t be in a relationship with someone who is engaging in such self destructive behaviors,” and then don’t follow through when no change occurs, you are setting yourself up for a cycle that is going to make you both miserable. Don’t make this type of comment unless you know you can carry through with it.
Some take home points:
• The only behavior you can change is your own. By modifying yours, you may notice a change in your spouse/partner.
• If you can’t accept your partner/spouse the way they are, give them the distance you both need.
• It’s not how we think, feel or say, it’s what we do that matters.
• Ultimately it’s their life and their choice. It’s your life and your choice.
Saturday, February 12, 2011
Health Advocate- Who What When and Where
Most people with chronic conditions have probably heard or read that it’s a good idea to have an advocate at medical appointments, when you are hospitalized and to help you navigate the medical system.
So who makes a good advocate-spouse, best friend, parent, adult child or some one trained in that role? When do you need them? What do they do? Can I hire one? Where do I look for one?
Advocates can fill a number of roles. Simply put, an advocate helps to make sure you get the care you need and want, medically as well as at home. Because many advocates are often family and/or close friends, they can also be the one helping to care for you physically.
With the majority of people living for many years with a chronic condition, the role of advocacy has taken on a new meaning in the last several decades. Providers have embraced the idea that it’s up to the person to decide about how they want to live, whether to do treatment or not, what type etc. In short, the more complex health care becomes, the more choices we have and the more we are asked to make them. An advocate can help make a lot of this easier.
Start by addressing how you would use an advocate. Do you want them to go to appointments with you or the person you are caring for? Do you need help figuring out treatment options, insurance forms, payment plans, care at home, clinical trials and/or how to navigate the health care system?
If you, or the person you are caring for, are in need a personal care attendant, keep in mind that some will have good advocacy skills. Others may be excellent at meeting personal care needs, but are not comfortable with a strong advocacy role. For the most part, an advocate that you hire isn’t going to do the personal care.
As noted, you can hire a nurse manager or care manager. However, many people with chronic conditions can’t afford it. Since aspects of advocacy are covered by medical (care) and service managers (social workers), and hiring an advocate can range anywhere from $35 to $200 an hour, start by finding out what type of advocacy resources are available from the following:
• The local chapter of a condition specific organization, e.g. The Diabetes Association l A growing number of groups are offering advocacy training and some even have trained staff who can act as your case manager.
• Independent Living Center for your state Call 713-520-0232
• Medical center, hospital or clinic where you receive your care.
• Offices on Aging, Senior centers
• Cancer centers and other condition specific centers within a medical system, e.g. Motion Disorders Clinic, often offer peer-to-peer advocates.
• Support group: Often through these groups, people become each other’s peer advocate.
Depending on the community where you live, churches and even local ambulance services can offer some advocacy related services. You can always dial 2-1-1, the state specific helpline, and ask about advocacy resources for your community. Eldercare Locator connects older Americans and their caregivers with sources of information on senior services, including case management. You can also reach them by calling 1-800-677-1116 weekdays, 9:00 am-8:00 pm.
Peer-to-peer programs can be very helpful in assisting you in navigating the healthcare system, making decisions and identifying community resources that will be helpful. These programs are often free.
Who makes a good advocate? Truth be told it may not be your spouse, partner or best friend. It can be hard for them to be objective about the information and choices being offered. You may not want to share certain aspects of your with them. They also may not have the background or skill sets to deal with getting you in quicker to see a doctor, dealing with your insurance company or actively listening. It’s sometimes best to have a neutral third party.
These are things an advocate can do for you:
At a Medical Appointment
• Can help you prepare for the visit by going over various issues and problems you may be experiencing. They can be a “check and balance” to make sure that all of your questions are answered and an effective plan is in place before you leave.
• Take good notes during the visit with the medical provider.
• Listen objectively and can discuss with you what went on at a visit, hospitalization etc.
• Will provide you with a good written summary of office visits.
• With your permission, can speak on your behalf during the visit about issues and concerns you might be having and make sure that all questions are answered and a follow up plan is in place.
• Will keep your confidence and not discuss what happens with others unless you direct them to do so.
At the Hospital
These recommendations came from my colleague Grace, who not only has been a long standing board member for the non profit I am co director of, but has lived for many years with multiple chronic conditions:
1) Be an advocate for the person who is ill. Speak with (polite) authority to his/her medical providers and make it clear what you know the patient needs and what you reasonably expect them to offer.
2) Question procedures and prescriptions, making sure that what the provider is doing is not going to have a detrimental impact on the patient.
3) Explain the patient’s home situation to the doctor so (s)he will prescribe outpatient care and prescription medicines that are realistically affordable for the patient and can actually be realized; it does no good to recommend physical therapy or “third tier” medications if the person can’t afford them or has no access to get treatment.
4) Act as or organize an information conduit so the patient doesn’t have to answer dozens of phone calls from friends asking the same questions over and over again about the state of her/his health. Make sure other family and friends are informed as much as the patient wants them to be and request that calls be limited to encouragement and support instead of asking for daily healthcare updates from the patient. Also, be willing to return calls on behalf of the patient so (s)he isn’t overwhelmed with inquiries when (s)he doesn’t feel up to talking.
5) Offer to take care of some of the daily responsibilities the patient may have at home or organize a group of volunteers to help out: feed the pets, mow the lawn, shovel the snow, take in the mail, do the laundry, clean the house, do whatever makes sense to alleviate the patient’s worrying about what (s)he will find upon coming home.
For more information about advocacy during hospitalizations
Hospitalized: What Family and Friends Can do
Hospitalized What Family and Friends can do Take 2
Hospitalized Consumer Reports Study
At Home
• Help to arrange services so that you can remain at home. Such services might include: transportation, home health, meals, hospice, housing, fuel assistance and more
• Handle insurance and payment issues.
• Deal with work related issues.
Keep in mind, with the baby boomers now turning 65, there is going to be a growing demand for health advocates. Don’t be surprised that even if you qualify, the service may not be available any time soon. Therefore, as noted in the November post on social networking, staying connected with family and friends can help you draw upon advocates when you are most in need. To help them help you, share with them the post How to be a Friend with a Pen.
So who makes a good advocate-spouse, best friend, parent, adult child or some one trained in that role? When do you need them? What do they do? Can I hire one? Where do I look for one?
Advocates can fill a number of roles. Simply put, an advocate helps to make sure you get the care you need and want, medically as well as at home. Because many advocates are often family and/or close friends, they can also be the one helping to care for you physically.
With the majority of people living for many years with a chronic condition, the role of advocacy has taken on a new meaning in the last several decades. Providers have embraced the idea that it’s up to the person to decide about how they want to live, whether to do treatment or not, what type etc. In short, the more complex health care becomes, the more choices we have and the more we are asked to make them. An advocate can help make a lot of this easier.
Start by addressing how you would use an advocate. Do you want them to go to appointments with you or the person you are caring for? Do you need help figuring out treatment options, insurance forms, payment plans, care at home, clinical trials and/or how to navigate the health care system?
If you, or the person you are caring for, are in need a personal care attendant, keep in mind that some will have good advocacy skills. Others may be excellent at meeting personal care needs, but are not comfortable with a strong advocacy role. For the most part, an advocate that you hire isn’t going to do the personal care.
As noted, you can hire a nurse manager or care manager. However, many people with chronic conditions can’t afford it. Since aspects of advocacy are covered by medical (care) and service managers (social workers), and hiring an advocate can range anywhere from $35 to $200 an hour, start by finding out what type of advocacy resources are available from the following:
• The local chapter of a condition specific organization, e.g. The Diabetes Association l A growing number of groups are offering advocacy training and some even have trained staff who can act as your case manager.
• Independent Living Center for your state Call 713-520-0232
• Medical center, hospital or clinic where you receive your care.
• Offices on Aging, Senior centers
• Cancer centers and other condition specific centers within a medical system, e.g. Motion Disorders Clinic, often offer peer-to-peer advocates.
• Support group: Often through these groups, people become each other’s peer advocate.
Depending on the community where you live, churches and even local ambulance services can offer some advocacy related services. You can always dial 2-1-1, the state specific helpline, and ask about advocacy resources for your community. Eldercare Locator connects older Americans and their caregivers with sources of information on senior services, including case management. You can also reach them by calling 1-800-677-1116 weekdays, 9:00 am-8:00 pm.
Peer-to-peer programs can be very helpful in assisting you in navigating the healthcare system, making decisions and identifying community resources that will be helpful. These programs are often free.
Who makes a good advocate? Truth be told it may not be your spouse, partner or best friend. It can be hard for them to be objective about the information and choices being offered. You may not want to share certain aspects of your with them. They also may not have the background or skill sets to deal with getting you in quicker to see a doctor, dealing with your insurance company or actively listening. It’s sometimes best to have a neutral third party.
These are things an advocate can do for you:
At a Medical Appointment
• Can help you prepare for the visit by going over various issues and problems you may be experiencing. They can be a “check and balance” to make sure that all of your questions are answered and an effective plan is in place before you leave.
• Take good notes during the visit with the medical provider.
• Listen objectively and can discuss with you what went on at a visit, hospitalization etc.
• Will provide you with a good written summary of office visits.
• With your permission, can speak on your behalf during the visit about issues and concerns you might be having and make sure that all questions are answered and a follow up plan is in place.
• Will keep your confidence and not discuss what happens with others unless you direct them to do so.
At the Hospital
These recommendations came from my colleague Grace, who not only has been a long standing board member for the non profit I am co director of, but has lived for many years with multiple chronic conditions:
1) Be an advocate for the person who is ill. Speak with (polite) authority to his/her medical providers and make it clear what you know the patient needs and what you reasonably expect them to offer.
2) Question procedures and prescriptions, making sure that what the provider is doing is not going to have a detrimental impact on the patient.
3) Explain the patient’s home situation to the doctor so (s)he will prescribe outpatient care and prescription medicines that are realistically affordable for the patient and can actually be realized; it does no good to recommend physical therapy or “third tier” medications if the person can’t afford them or has no access to get treatment.
4) Act as or organize an information conduit so the patient doesn’t have to answer dozens of phone calls from friends asking the same questions over and over again about the state of her/his health. Make sure other family and friends are informed as much as the patient wants them to be and request that calls be limited to encouragement and support instead of asking for daily healthcare updates from the patient. Also, be willing to return calls on behalf of the patient so (s)he isn’t overwhelmed with inquiries when (s)he doesn’t feel up to talking.
5) Offer to take care of some of the daily responsibilities the patient may have at home or organize a group of volunteers to help out: feed the pets, mow the lawn, shovel the snow, take in the mail, do the laundry, clean the house, do whatever makes sense to alleviate the patient’s worrying about what (s)he will find upon coming home.
For more information about advocacy during hospitalizations
Hospitalized: What Family and Friends Can do
Hospitalized What Family and Friends can do Take 2
Hospitalized Consumer Reports Study
At Home
• Help to arrange services so that you can remain at home. Such services might include: transportation, home health, meals, hospice, housing, fuel assistance and more
• Handle insurance and payment issues.
• Deal with work related issues.
Keep in mind, with the baby boomers now turning 65, there is going to be a growing demand for health advocates. Don’t be surprised that even if you qualify, the service may not be available any time soon. Therefore, as noted in the November post on social networking, staying connected with family and friends can help you draw upon advocates when you are most in need. To help them help you, share with them the post How to be a Friend with a Pen.
Sunday, November 8, 2026
Life with Chronic Conditions: Be the advocate for the Patient and their care team
This morning I came across an article in the Wall Street Journal Hospitals are so crowded patients spend 24 hours in the ER hallways Wait times for hospital beds are getting longer, clogging up emergency rooms, and doctors say it is only getting worse,
A good friend of mine just experienced this, hence today's post.
Many hospitals are under staffed, either due to budget cuts or can’t find personnel. Many hard working members of the medical team are dedicated, caring, and badly overworked. Both the patient and their medical team need our advocacy and support.
As noted in the Wall Street Journal article, Patients who are stuck in the E.R. should bring medication lists and be candid with staff about what they are experiencing. They shouldn’t be afraid to ask for care or for updates on when a bed will become available. “It’s OK to advocate for yourself, to put us on the spot.”
Not every patient is in a position to advocate for themselves, this is what you can do to support them.
HOW TO ADVOCATE FOR A PATIENT Start by working with family and friends to cover shifts in the hospital. If no one can cover a time period, see if the hospital has a sitter program or if they can help you arrange one. A sitter will stay with the person and can advocate for them if needed. Keep in mind that certain patients-such as those who are unconscious, have cognitive issues, are in severe pain-are particularly vulnerable and need advocates around the clock if possible. Others mainly need help during the day. Note there are places where there are strict limitations on visting. These are set in place for a reason so please adhere to them.
• Check with the hospital to see if they have a patient advocate program that can assist in getting what the patient needs in a timely manner. This is generally done through the social work department.
• HIPAA, which governs patient confidentiality, is implemented slightly different by hospitals as well as departments within hospitals. Many times the medical provider will ask the patient who you are and whether they have permission to speak in front of you. Some hospitals will want a signature from the patient stating they can provide you with their medical information.
• Spend time in the room and alert the staff when something is wrong-they aren’t getting medications on time, or appear to you as being in distress. If you need to leave the room, make sure the alert button is in easy reach of the patient. Having been the advocate for friends and family, I generally let the care team know if I’m leaving for the day or if I’m just stepping out, if I’m with someone that is seriously ill.
• Take notes and leave notes: Helping patients keep track of tests, procedures, meds, allergic reactions etc. is important to their healing and future health. In addition, the next person coming in has a better idea of how the day is going. Having a patient health notebook with a pen makes this process easier. After the hospital stay, the patient will have a good record that they can reference.
SUPPORTING THE HOSPITAL STAFF: You want to avoid being labeled a “difficult family” as much as possible. "Difficult families ask questions in an accusatory tone and are not satisfied with our answers. They demand updates at a frequency that we find excessive, they interrogate the nurses, they make choices that we find objectionable.… They are considered unreasonable.” However, what hospital personnel consider “difficult” may in fact be good advocacy for a patient that’s being overlooked. A lot of this is about how you approach the staff.
• Pick a point person: The last thing overworked staff need are lots of different family and friends calling and wanting information, Ideally the point person would be the patient’s health proxy (the person who can make medical decision if the patient is unable to do so). The goal is this individual talks by phone or in person, is part of the patient team meetings and disperses the information to the rest of the family. During care team meetings, notes should be taken so the information is understandable to the family. Don’t hesitate to repeat back what you think they’re telling you. This gives an opportunity to correct something you may not be clear about.
• Know their schedule: Respect busy period, shift changes, meals etc. and avoid calling or requesting non-urgent updates
• Listen: Listen to what the medical care team is telling you. It’s helpful to write questions down when you are thinking of them. This is the time to ask your questions and get clarification on something you or the patient don’t understand.
• Adhere to hospital policies: Policies and procedures are put in place for the patient, staff and visitors safety. Abide by the rules. If the area restricts live flowers, don’t bring them as this may be part of infection control. Sneaking in a pet, drugs (prescribed, over the counter or illegal) or other restricted items can cause a lot of problems and ultimately takes away from needed patient care.
• Donations: There are a variety of ways to make donations that help both the staff and patients. Check with hospital personnel about what would be helpful.
• Thank you: Please and thank you are always appreciated. You can also express gratitude by providing, lunch, snacks, coffee, or gift certificates.
• Volunteer: If you have the time, talk to the hospital’s volunteer coordinator and see in what ways you can help. I have several friends that are artists and they will run workshops at the hospital for staff and patients.
· Provide feedback: Positive or negative, feedback about your experience is helpful. Unfortunately, people are very quick to complain and seldom let people know how much they appreciate the help they were given. I was working at a mountain first aid unit and by the end of the season I figured I was burned out and decided not to return the following year However, a family sent the most amazing letter about how we had made such a difference for them, I rethought that decision.
Other Posts
• How to be a friend with a pen
• Responding when Disaster Strikes Friends and Family
• How to Help Those Who Are Injured, Ill, Grieving or in Need of Comfort
• How Caregivers Can Improve Communication With Hospital Staff
Saturday, January 5, 2013
Creating positive health outcomes for patients: Five Things Family/Friends can do
This past week,
I dealt with a number of people who are coping with a wide array of chronic and
acute health care issues. Unfortunately, I witnessed a variety of ways patient
care was compromised -understaffing; vital
information not entered into a chart; a patient falling because the alarm
buzzer hadn’t been set on their bed and so forth. When I discussed this with my
sister, who has been a nurse for well over 35 years, she said, “It’s always
been like this. ” Other people I talked to agreed with her and made comments
along the same line, often shrugging their shoulders, telling their own horror
stories, and saying, “So what’s new?" What can you do?”
At this
juncture, complacency isn’t an option, particularly with the aging population
and the arrival of Obama care. It’s time we each do what we can do to make this
better. Making a change in one area can create a whole new way of thinking and
doing.
On New Year’s
Day, I sent an e-mail to colleagues and friends detailing some of what I had
witnessed and posing a challenge-to implement a demonstration project that
would improve care that can be replicated for nominal costs. This has created some very interesting
dialogue and good suggestions. As a result, this is Part I of a four part
series where I will be posting five suggestions each, for family/friends,
patients, communities and hospitals, which they can do to improve health outcomes
for patients.
My goal is to
identify straight forward approaches that have minimal or no costs associated
with them, are effective based on research and/or from those with extensive
experience working in the field, and can be easily implemented in a variety of
settings.
Please post your
comments, suggestions and relevant resources below, or e-mail them to me at margoc@tds.net At the completion of the
series, the posts, along with additional comments and suggestions, will be
formatted into a simple PDF handout, which will be available by e-mailing
margoc@tds.net
Five Things
Family/Friends Can do to Create Positive Health Outcomes for Patients
Your relationship with the patient, how close you live to them, as well as the
nature of their condition, will determine the full measure of what you can
realistically do. However, whether you are a caregiver, or a distant
neighbor, everyone can do
something, even if it’s just sending e-mails or notes of support.
1. Respond. How to Respond When You Learn that Someone is Ill or Injured is one of the most frequently downloaded items on this blog. It’s clear that
many want to help but don’t know how. Read this post to learn simple ways you can provide support regardless of where you live or
who the patient might be.
2. Learn to
be an effective advocate.
When a person is compromised by age, a variety of chronic conditions,
critically ill, and/or has been
newly diagnosed with a very serious condition, they need help. Even on a good
day, people only retain a portion of what transpires in a medical office visit,
so if you’re very sick or compromised in some way, you may have no clue what
the provider is telling you. Research shows that taking a advocate to
appointments results in better visits and ultimately better patient care.
Become a “Friend with a Pen.” Go to medical appointments, as well as visits with case managers, social
service agencies and other places where they receive either medical care or
social services support. Take notes, speaking up when the patient is unable to
do so and with their approval when possible.
Stay with them
in the hospital, helping them obtain the care they have specified and need.
Further reading
on this topic:
• Hospitalized:
A Three part series to help patients get better care when hospitalized
3. Help them
navigate the health and social service systems. Using the “Getting What You Need: Checklist" understand what the person might need and know what is available locally. This
handout includes information on the following:
- Resource numbers/websites-Among the
resources are connecting with the local chapters of condition specific
organizations, such as the American Cancer Society. These groups will often
have advocates and case managers that can make this process a lot easier. They
can also provide easy to understand information about the condition, treatment
plans etc.
- Building and organizing support
networks-Don’t go it alone.
- Legal issues
- Health Insurance and paying for health
care/medications/non medical needs
- Benefits-disability, supplemental,
worker’s compensation
- Life settlements, viaticals, reverse
mortgages
- End of life care
- Work-disability, vocational
rehabilitation
- Maintaining a personal health notebook
- Case management
- Decision making
4. Encourage
them to be an effective/empowered patient: While there are times that family/friends need to take the
lead, in general patients are their own best advocate. Since 99% of chronic
care takes place outside of a medical facility, it is important that the
patient recognize that they are in charge of their own care. Besides, research
shows that more involved patients do better. You can help them in taking
responsibility for their care by:
- Role modeling advocacy skills
- Letting them take the lead and only stepping
in when they need help or are unable to speak for themselves.
- Helping them set goals about what they
want for themselves as far as healthy outcomes, treatments etc. This can be
done in a number of ways- having them outline areas of concern prior to medical
appointments; framing questions and concerns in ways that are more likely to
get a response; identifying underlying and root issues to problems; completing
legal documents, such as advanced directives; keeping a personal health
notebook
- Accepting what they tell you
- Encouraging them to learn more about
their condition, joining a support group etc.
Keep in mind
that regardless of how helpful you want to be, it’s their life. You
may not agree with what they are choosing to do, but it’s ultimately their
choice to do what they believe is right for them.
Note that if the
patient is capable of doing things on their own, and you do it instead,
regardless of reason (they take to long; they may not do it right) you under
mind their ability to do things on their own.
Saturday, November 26, 2022
Life with Chronic Conditions: Getting Health Care After Hours/Holidays
I’ve spent considerable time in emergency rooms, this past week, assisting others in getting care. One person was admitted to the hospital, with the hope of getting home in time for Thanksgiving. Unfortunately, that wasn’t to be. This person’s adult child, who lives out of state, is having a hard time finding out what’s going on with their parent as lots of people are off and those working are over extended.
Today’s post is all about getting the care you or your charge needs on weekends/ holidays and after hours.
Consider the following:
• Prepare for emergencies: The more information you have, the better the emergency care plan you can put in place. If you haven’t done so, discuss the following with your/their medical provider at an office visit:
- Who you should contact in the event of an emergency.
- What symptoms require an immediate trip to the emergency room and when to first call the provider?
- Is your provider connected with a “Virtual Urgent Care” option and/or some form of 24/7 walk in care. Should you pre-register for this service? Will your insurance cover it?
- Can you e-mail them? Do they regularly check their e-mail?
- Do they offer after hours telemedicine?
- Do they have an answering service for after hour calls? If they don’t offer any type of after-hours care, that’s a good indicator that you need another provider.
Know the urgent care center(s) that serves your area, their hours of operation and what type of payment they require.
• Unless it’s an immediate emergency, such as severe chest pains, a call maybe all you need. Only call your provider for urgent/emergent situations. If the question or situation can wait until the next day, do so. When you call you will most likely get their answering service so give concise and relevant information, with a phone number where they can reach you. Call backs are generally less than a half hour. When the call is returned, explain symptoms and ask what your next steps should be. Ask if telemedicine is an option.
• Consider Urgent Care over Emergent. Because emergency rooms are very busy, assess whether you could go to a local urgent care center instead. Waits are generally shorter at an urgent care center and the bill will be less.
Urgent Care centers are capable of treating a wide variety of illnesses, including respiratory illnesses (asthma, pneumonia, cold/flu symptoms, upper respiratory infections), gastrointestinal illnesses (vomiting, diarrhea), open wounds (including those needing sutures or staples), rashes, and minor skin/wound infections. Sprains/strains and even some fractures can be managed by Urgent Care center physicians, which typically have an on-site laboratory and X-rays. Consider where you live as to what may be offered by Urgent Care. Living near a major ski resort, our local urgent care center does high volume orthopedics.
Virtual urgent care can deal with things like acne, allergies, constipation, cough, diarrhea, ear problems, fever, flu, headache, insect bites, nausea, pink eye, rash, respiratory problems, sore throats, urinary problems (UTI), vaginitis or vomiting.
There are a lot of “virtual doc” websites. Talk to your provider in advance to see if it would be appropriate for you to use one should need arise, and if they have a service they’d recommend.
• Take a Friend with a Pen: When you are having an emergency, it’s good to have someone with you that can take notes and help you understand what’s being said. Further, if they know your history, they can provide information that you may forget. Since ERs can be very busy, your friend can also track someone down if there is no response to your call button.
• Understand what a “hospitalist” is: This is a fairly new term, coined in 1996, that refers to the doctor that takes care of you in the hospital. Hospitalists manage and treat a significant range of complex and comorbid disease conditions. Hospitalists typically undergo residency training in general internal medicine, general pediatrics, or family practice. A minority of hospitalists specialize in fields including neurology, obstetrics and gynecology, and oncology.
While your provider may refer you to the ER, they will most likely not be overseeing your care there or in the hospital should an admission be required.
If you want to understand how you, or the person in your charge is doing, get the name of the hospitalist and work with them. Just like your regular provider, if they are off, someone will be covering for them regardless of time of day.
• Use a Patient Portal: Most healthcare services are tied in to “Patient Portals.” These are basically a way for you to access your health information including hospital test results, medical records, and a direct line of communication to your physician's office regardless of time. You access this on-line and can use an app available on your smart phone. Check with your provider about how to access the patient portal for the place where you or your charge receives care.
Saturday, August 11, 2012
How to Help Someone Get the Medical Care They Need
Recently, I received the following request via e-mail, I've been talking to a woman, with really complicated health issues and no support system. She's been getting disconnected/uncoordinated care. A partial list of her conditions were included along with a description of some pretty major symptoms. The question I was being asked was, what could be done to help this person, with multiple chronic conditions, get the medical care they need?
A new study shows that a growing number of Americans (21%), between 45-64 have at least two chronic health issues. In those over 65, the incidence increases to 45%. The survey was compiled by the U.S. National Center for Health Statistics (NCHS). This study also found that increasingly people are delaying care, not getting the care they need and/or not taking medication because of cost.
The rise in the number of people with more than one chronic condition "presents a complex challenge to the U.S. health care system, both in terms of quality of life and expenditures for an aging population," the report stated. July edition of the NCHS Data Brief.
Given that the baby boomer generation is aging, with the ranks of the 65 and up reaching unprecedented levels, the type of request I received is becoming increasingly more common.
So here’s a crash course in how you can help someone get the medical care they need. Note that this is about “medical” not “life” care (dealing with issues, such as finding housing or transportation, getting an elderly parent to give up their license etc).
As I have written on aspects of this topic before, I’ve included links to other posts on the Healing Whole blog where some of the issues have been dealt with in more depth.
If you have tried something that has worked well please be sure to post it below, or you can put it on Facebook or e-mail to margoc@tds.net
• Communicate: If at all possible, try to have a conversation face to face. If that’s not possible, use the phone or Skype. As one nurses noted, seeing her son’s skin rash via Skype was more helpful then his description. E-mail can be useful, but a lot of back and forth gets old really quick. Texting, while the preferred way to communicate for teens and adults up to around 40 it has the same draw backs as e-mail and you can have some very sore thumbs before it’s all said and done. That noted use whatever means the person is most comfortable with.
• Address immediate issues first. In the case above, the phone conversation revealed significant medical symptoms that required that the person be seen as soon as possible. According to the American College of Emergency Physicians, the following are warning signs of a medical emergency:
- Difficulty breathing, shortness of breath
- Chest or upper abdominal pain or pressure
- Fainting
- Sudden dizziness, weakness or change in vision
- Change in mental status (such as unusual behavior, confusion, difficulty arousing)
- Sudden, severe pain anywhere in the body
- Bleeding that won't stop
- Severe or persistent vomiting
- Coughing up or vomiting blood
- Suicidal or homicidal feelings
If the person is on a new medication, had surgery, is receiving chemo or radiation therapy, or dealing with unique medical issues, they will most likely have received information about when to call the doctor and when to head directly to the emergency room.
• Call an ambulance, if you answer yes to any of the following questions:
- Is the person's condition life-threatening?
- Could the person's condition worsen and become life-threatening on the way to the hospital?
- Could moving the person cause further injury?
- Does the person need the skills or equipment of paramedics or emergency medical technicians?
- Would distance or traffic conditions cause a delay in getting the person to the hospital?
• Call the treating provider. Whether it’s a side effect or a new problem, if the person has a medical provider, contact them if they are having problems. In the case of a true emergency, call the ambulance first and then the provider. Not only can the provider offer suggestions to deal with non emergent issues, but if you need to go to the hospital, they can call ahead and make things easier.
• There is a time and a place for emergency rooms. Check out Emergency room docs offer inside scoop: How to get treated, faster, better.
• If they don’t have a medical provider: If they need to be seen immediately, use the emergency room or an urgent care center based on what type of problems they maybe experiencing. If need isn’t immediate, check the health insurance policy as some have a list of providers to choose from.
In finding a provider, research shows that among the best recommendations actually come from family and friends. You can also contact your state’s medical association for a referral or for a condition specific specialists, such as an oncologist, call your local chapter of the condition specific organization
For more on this topic, check out How to Find the Best Doctors.
• If they don’t like their provider: The most important question to ask is why don’t they like their provider. Are their expectations realistic? People will often look to their health provider for life care versus health care. If it’s a “bedside manner” issue, and they are going alone to office visits, this might be eliminated by having an advocate with them. If this is a situation where they don’t trust their doctor clinically, then follow the suggestions above for finding a new medical provider.
• Use a Primary Care Provider: One of the biggest medical problems people face with multiple chronic conditions is who is in charge. The more complex the medical situation, the more difficult this can become. Theoretically, the person along with advocate/family, is the head of the medical team. However, it’s important to have a provider that can help coordinate what is going on if multiple providers are involved.
On the face of it, this sounds like the role of the primary care provider and some family medicine and internal medicine doctors and physician assistants do a great job in this area. However, it’s not uncommon for them to be concerned because the person has a major illness, like a cancer, Parkinson’s Disease, hepatitis and want to have the specialist treat them. In fact, many are taught that if it’s x, y or z disease “turf it to the specialist.” Fortunately, this is starting to change as more and more people are living with multiple chronic conditions.
• Use a Medical Case Manager: A case manager is someone who can help monitor and coordinate care being delivered. While some people hire an individual to do this for them, some medical centers provide this service, particularly places like cancer centers, often through their social work department. For certain diseases, case/care management may be available through the local chapter of a condition specific organization.
• If finances are a concern: If they are not going for care, taking medications or doing without treatment for fear of medical bills, be advised that. there are a number of programs available, including free clinics, and assistance for medications. See What are my options? Paying for Healthcare for more on this topic.
• Use an advocate: An advocate helps to make sure the person gets the care they need and want. They can play a variety of roles and can be paid, family or friends or a volunteer. Some chapters of condition specific organizations will provide them as do some hospitals and clinics. However, many are not in the position to afford a patient advocate. In the case above, we discussed the person in need’s possible circles she could draw from to serve as an advocate-someone that could accompany her to medical appointments/hospital, take notes and be supportive as she interacts with the medical community. Consider the networks a person may be involved in such as church; clubs; organizations; work; school; community groups; neighbors; support group, including AA. Learn more about being an advocacy at Health Advocate Who, What, When and Where
• Use a Personal Health Notebook: Keeping a personal health notebook is important for a variety of reasons including
- The person who is living with the chronic condition(s) and/or family/advocate are responsible for making decisions about care and treatment. This can be an overwhelming task as multiple health providers are involved and the variety of paper and information being generated from tests, treatments, to say nothing of health insurance, is mind-boggling. The more organized you can be, keeping information centralized, the easier some decisions will be to make.
- The medical chart may not be available for a host of reasons: new doctor, emergency visit, computer clitch etc. Having the information in hand reduces errors.
- If something happens, what medications and other necessary information, will be available for family and health team. This is particularly important if several people are involved in someone’s care, such as adult children caring for an elderly parent. Having centralized health information, that all have access to, helps to simplify a complex situation.
To read more on this topic, including links for free on-line and printable health notebooks, Managing Health Information: Yours/Theirs.
• Take Notes During Office Visits and Hospitalizations: If you are in the position of advocate, take good notes from the time they start doing basic vitals (Temperature blood pressure check etc.) all the way through to when the provider exits the office. You want to write down the following:
- Vitals (temperature, weight, blood pressure etc.)
- Results from any tests
- Findings from physical exams
- Provider comments about current medical situation
- Questions asked and responses to questions
- Next Steps (write down future appointments, medications prescribed etc.)
More on this topic: How to be a Friend with a Pen
Other posts that might be useful
• Healing the Whole Person: Ways to Increase Well-Being
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