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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