Thoughts on the Quality of Death and Dying: A personal reflection

As many of you know, I have spent much of the past year taking care of my elderly mother. While she had lived with us since Katrina flooded her home in New Orleans in 2005, this past year has required the greatest amount of hands-on caregiving. Mom died on May 6, and I find myself thinking a great deal about her personal experience of the process of dying…and how we treat the elderly in this country. This is a huge area worthy of many a dissertation; this will certainly not be an exhaustive take on this topic and may be very subjective.

First, I should state pretty clearly my basic assumption: I believe we have not done ourselves any favors by extending human life for as long as we have without providing the elderly with a meaningful and satisfying place within our communities and our homes. Secondly, in this article, I am talking about the very elderly and those in significant decline. Even those who have stayed healthy and active well into their eighties are frequently shunted into custodial care and isolated from their families and their communities when they approach death. I think this is an unconscionable shortcoming of U.S. culture. Life without a meaningful role is not worth much; life in poverty and isolated from others for no reason but ‘being old’ is a crime. Below are a few thoughts about five areas I consider important.

Places to live

In Florida where I live, and in many other places with a large senior population, older adults have isolated themselves in communities for active, over-55 residents. These communities have the reputation of feeling like a resort…at least, until debilitating illness strikes or infirmity makes continued independent living difficult. Then these retirement communities have the same problems as any other neighborhood in which a person might choose to live. Doctors’ offices are a drive away and transportation and drivers are limited. Houses are built with no thought to canes and walkers and wheelchairs; doorways are too narrow, stairs are too frequent, bathtubs are impossible to step into or get out of, counters and appliances are too high. And in many communities there is often an additional problem; the elderly residents are far away from their children or other closely connected people who are able and willing to assist them. In 2011, almost half (47%) of women over 75 lived alone. In 2009, 14.3% of adults 85 or older lived in an institutional setting rather than in their own home. A small percentage live in some other kind of community-based residence ranging from communal farms to Continuing Care Retirement Communities (CCRC’s). Even so, there are not yet enough good choices.

Activities/jobs/functions that maintain involvement and contribute to the community well-being

One of the biggest problems we encountered when Mom moved into our home was that she had been displaced and no longer had a community of her own. Most of her dear friends and family were still loving somewhere in Louisiana. She was in shock because of the loss of her home and her community and was unwilling and unable to undertake the work needed to develop friendships here. At 85, the effort to build a new community was outside her capabilities. I would venture a guess the same might be true for many people at that age.

Respectful care

Doctors in Florida believe they are the best at taking care of the elderly. They have lots of experience at it and often do a very good job. Our overwhelming experience was of very good care; my experience was that the amount of and complexity of care was overwhelming. Without me or someone equally knowledgeable as an advocate, it is my hunch that Mom would have floundered when faced with the choices with which she was presented.

The right to receive and to refuse treatment

Even given the high quality of the care she received, the tendency of physicians and the system is to provide a great deal of care…many medicines, recommendations for procedures and surgeries, frequent visits. Part of my job was to support her in her decisions about her care, especially when she decided “no” to something. Even given her leaning toward little care, the number of medications prescribed for her was high. The pressure to accept treatment is significant. Early on in her stay with us, one doctor told me that declining an endarterectomy (a high risk procedure with little upside for an 86 year old) was irresponsible; we were certainly inviting stroke. We did not return to that physician.

To their credit, physicians are charged with curing/helping/fixing their patients…even if their patient is over 85; but is this what we really want? And how is a compliant patient who is used to doing what her doctor recommends supposed to turn down what is offered and even expected? How much do we actually have a right to refuse treatment?

The right to die at home with excellent care

And then we get to the biggest, final question…how does one arrange to be taken care of and to die at home while also having excellent care? Fortunately, there is an answer to that question…hospice care.  When cure is no longer the focus, when an elderly person has begun a significant decline and is failing to thrive, hospice care may be the kindest, most satisfying way to be comfortable, to be cared about, and to be cared for respectfully. One of the largest benefits to the person dying is the support provided to the primary caregiver, making it possible for them to continue providing care and to remain loving during the process. It certainly was one of the most helpful things Mom and I experienced in the last three months of her life. Warm, cheerful, supportive caregiving assistants taught me how to lovingly allow her to die.

Many of you have privately shared some of your own caregiving experiences. I hope you and others will weigh in here. I am sure you have thoughts we can all benefit from. Just enter your comments below.

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