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:

• Health Advocate-Who, What, When and Where 

• Hospitalized: A Three part series to help patients get better care when hospitalized

- What Family and Friends Can Do 

- Your patient is one of many to the staff 

- Consumer Reports Recommendations 

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. 

5. Be a Healthy Caregiver: If you are in the role of primary care giver, it’s important that you take care of yourself. Use the Caregiver Resources page to learn about self-care as well as the various challenges of care giving and ways to deal with them. Note that there is also a Youth Caregiver page.