A Strange Thing is Happening on the Way to Old Age

20150127-Botanical garden 185Turning 70 seems to have created a change in my thinking about life and death, and especially life until death. Maybe this is because I seem to be more aware of my mortality. My faith in the Christian message of the birth and death of Jesus has made death just another exciting part of my life’s journey, one I anticipate within the next 10 to 15 years. What scares me is that my body is wearing out in ways that can’t be fixed. I don’t want to face a debilitating, painful illness where I have lost control. I don’t want medicine to extend my life when there is no longer meaning or quality. This really scares me.

I have studied and taught the biological aspects of aging but until now they were about someone else. I am now realizing that my body is aging – wearing out. Isn’t it funny that we can know something intellectually, but then know it at a different level when we experience it. I am beginning to think about what it means that my aging body is going to fail in ways that could result in increasing dependency and, sometime soon, total failure.

This probably sounds morbid to anyone under age 60 and you may not want to read any further – unless you have aging parents and then you should stick with me. If you are somewhere around 70 you should definitely read on because what I am experiencing is universal and inevitable. If you are having a hard time reading this, rest assured I am having a hard time writing about it. I want to be like Scarlet O’Hara and think about it tomorrow. But another part says I need to think (and write) about it now so that I may be able to impact how I choose to use health care and how I live until the end, before I get caught in the health care web and it is too late to decide for myself.

I have been thinking and reading about this for a few months. The first pressure to think about it came from health care providers asking if I had a health care directive. I finally forced myself to create one a couple of years ago when we updated our wills. I thought about it, and we talked about it, and it was much easier than I thought it would be. The reason it was easier was because the decision I made was for right now – this year. I know what kind of medical intervention I want now but I also know I will want to make changes to it as my body wears out in ways that are irreversible. As my body changes, I know my desires for health care and living will also change so I will repeatedly update my health care directive. Maybe we need to update our health care directives when we change the batteries in our smoke detectors.

I received another nudge to think about how I want to die from a post by Brian on his travel blog Everywhere Once titled “To Go Gently Into That Good Night?”  Brian doesn’t leave his life to chance – and I always enjoy reading his very well written essays on making good choices for traveling and life in general. In this essay he is thinking about the choices we can make about how we want to die.

Brian introduced me to the thinking of Ezekiel J. Emanuel who is an oncologist, a bioethicist, and a vice provost of the University of Pennsylvania. Brian talks about Dr. Emanuel’s decision to decline all medical treatment at age 75, electing to die of whatever ailment come first. I later read Emanuel’s article in the October, 2014 issue of The Atlantic and think that his decision is too extreme for me. He is now 57 and has decided that he will decline all medical treatment when he reaches age 75, including flu vaccines and penicillin. In the cost/benefit analysis that takes place when we make good decisions, it doesn’t seem logical to decline a treatment that doesn’t decrease quality of life but can protect and heal us for a while longer. But his arguments extended my thinking beyond my health care directive to thinking about under what conditions I would want to decline medical treatment when I am sitting in my doctor’s office instead of looking up at first responders or in an emergency room.

My thinking was further stimulated when we were with friends last summer talking about what all 70-somethings get around to talking about eventually – health issues. One friend is an ovarian cancer survivor. As she talked about her experience I started thinking about what I would do if I got that dreaded diagnosis of cancer. Her description of her response to chemotherapy sounded very similar to what I experienced before I got my Fibromyalgia symptoms under control.

I realized how difficult chemotherapy would be for me. I would have to stop all the medications that are working so well for me. My starting point would be similar to her response to treatment – and then I would add the discomfort of treatment as another layer. I don’t think I want to do that. I have mentioned this to many friends and family members. A few seem to get it, but most look away. Choosing to die instead of taking on the medical fight doesn’t seem to sit well with people and I understand, especially when love is involved.

I probably can’t prepare a response for when I am told I have cancer or some other potentially fatal condition because my decisions will need to be based on the costs (emotional, physical, and monetary) and potential benefits at that time. But I think I will have a better chance of making the right choices for me and those I love if I have thought through what I value beforehand.

That is why I am writing about aging and death. I want to sort it out in my own mind while sharing with others so we can maybe have a dialogue. I don’t have more posts written and waiting to be posted because this is a process – of reading, thinking, and writing. But there will be more because I know it is a conversation we need to have. Feel free to leave a link if you have written on this topic.

Doctors & Patients: A Collaborative Relationship

Fibromyalgia

Fibromyalgia (Photo credit: Kindreds Page)

When I developed my chronic condition the first thing that happened to my life was that I started spending a lot more time in my doctor’s office. So much time that I thought I should be collecting frequent flyer points towards a free office visit. Or I should be given my own examining room with a recliner, a stereo system, and wet bar – and stocked with my favorite magazines. The nurses kept telling me they were working on it in the basement. What I received was a lot of time to read novels while I waited and time to think about this relationship that was forming. Through these frequent visits we learned how to work together and formed an excellent working partnership. In a series of posts I will be sharing with you what I believe made our relationship work so well and especially what it was about the relationship that contributed to my healing.

Originally I had written a section on what patients need from a doctor and then another section on what patients need to take to the relationship. As I was editing them for posting I realized that our relationship worked because we each brought complimentary qualities, knowledge and skills. We were collaborative partners with a shared goal of controlling my symptoms and increasing my functioning. According to Robin DiMatteo,[i] patients are most satisfied with partnerships rather than authoritarian control by the doctor because partnerships allow us to participate more in healthcare choices, leading to more informed decision making, better follow through and adherence to the treatment plan, and ultimately better health and quality of life. Continue reading

A Working Partnership

Having a doctor with whom we have a good working partnership is very important for us when we have been diagnosed with a chronic illness and are trying to put our life back together after the diagnosis. It seems that patients are most satisfied with partnerships rather than authoritarian control by the doctor because partnerships allow us to participate more in healthcare choices, leading to more informed decision making, better follow through and adherence to the treatment plan, and ultimately better health and quality of life[i].

The type of relationship we need with a doctor is different under different circumstances, and our needs are influenced by personality characteristics, culture and can vary with the severity of symptoms and illness. But our reality when we are attempting to get the symptoms of  a chronic illness under control is that we will need to spend more time attending to our health care needs and this requires maintaining a good working partnership with a doctor. With the help from a doctor who we trust, our symptoms are more likely to improve, we are more likely to regain functioning, and will be able to sort out what activities from our old life we are able to keep or resume, which ones we can keep but in a modified form, and which ones we will let go of.

 The excellent working partnership that I had with the family doctor who helped me get control of my fibromyalgia symptoms was an important factor in my learning how to manage FM symptoms, regaining a sense of who I am, and gaining a sense of normalcy that is allowing me to thrive. Finding a doctor I could work with didn’t happen purely by chance or totally by divine intervention. Before I developed fibromyalgia, I needed a general practitioner and visited several that I never went back to. Some of them did a good job of treating the medical problem for which I made the appointment, but I just didn’t feel right about how the doctor related to me.

 When I left my first appointment with the doctor I finally chose, I had the impression that he was competent, listened well, and showed an interest in me as a whole person, not just some symptoms. When I started developing symptoms of muscle weakness, muscle pain and fatigue he took them seriously and made referrals to specialist that resulted in a very thorough and thoughtful assessment but not a diagnosis. During this process he was responsive, genuinely concerned, and caring.

I decided to go to the Mayo Clinic, with the support of my doctor, to see if they could identify why I had gotten so sick so quickly. Additional testing had the same results but the doctors at the Mayo Clinic gave me the diagnosis of Fibromyalgia. The fact that I received the diagnosis there and went through their Fibromyalgia educational program seemed to give legitimacy to the diagnosis. Their Fibromyalgia Clinic also provided recommendations for treatment that I took home and these provided a starting point for my doctor as we worked together to decrease symptoms and increase my functioning. Fibromyalgia is very difficult to treat, however, and we had to work hard to maintain our relationship.

 My relationship with my primary care physician didn’t begin to feel complicated until I was faced with symptoms that doctors couldn’t diagnose and then with a chronic illness that not much was known about. Some early experiences in life made it difficult for me to trust that doctors would hear my complaints of pain and respond with caring and compassion. I wasn’t hostile towards doctors – I just didn’t trust them to hear me and take care of me. I found that as my need for help with health care increased, my anxiety over asking for help escalated. I realized that I needed my doctor in a way that I had never needed a doctor before and I needed to learn how to relate to him in a way that involved trust. 

Comment from Dr. Taylor: A barrier to having a good partnership is that Fibromyalgia is a gut-wrenching problem for the patient and a daunting one for doctors.

Developing a relationship built on trust requires something from both individuals in a relationship so I have prepared a series of posts about the characteristics that we need in our doctor and also what we, as patients, need to take to the relationship. I write from what I have learned through years of reading and personal experience and I hope that my writing will stimulate your thinking so you will identify what is important for you in a good doctor/patient relationship. I am now looking for a new doctor and am amazed at how hard it is because even though I know what I need, each doctor has a unique style and personality and it takes time to discover compatibility.  I need a doctor who believes FM is real and can tolerate the frustrations of treating something s/he can’t heal. I wouldn’t agree to marry someone on a first date and I’m finding I don’t want to commit to working on a relationship with a doctor after one visit. The doctor/patient relationship is a lot like a marriage in that each relationship is unique because of the combining of two unique personalities.

 As I write these posts I will be sharing what my previous doctor taught me about how to work together, including his comments in the sidebars. I had originally written these posts as a chapter to be published in a book and he read and commented on that material.


[1] DiMatteo, R. (2004). Doctor-patient communication. In N. B. Anderson, Encyclopedia of Health & Behavior (pp. 261-265). Thousand Oaks, CA: Sage Publications.