Thinking about being a burden on others

For twenty years, Oregon’s Public Health Division, Center for Health Statistics, has reported on the state’s Death With Dignity Act (DWDA), providing extensive detail on the characteristics of those who have used the DWDA. Among these characteristics are seven reasons people choose to use the law, which were identified at the beginning of the law’s implementation (participants may have more than one reason). The reasons are–

1. Losing autonomy
2. Less able to engage in activities making life enjoyable
3. Loss of dignity
4. Losing control of bodily functions
5. Burden on family, friends/caregivers
6. Inadequate pain control or concern about it
7. Financial implications of treatment

Over the years, these reasons have represented the primary reasons, in the order given and in about the same percentages, people have chosen to use the DWDA. But in 2017, the “burden of family, friends/caregivers” rose to cover over 55% of DWDA participants from just over the average of 42% for the previous nineteen years. I don’t know why more people gave that reason last year than in the years before, but it is a reason that many people are uneasy about, that some even find threatening to their own lives.

People from Not Dead Yet, the disability activist group that opposes all hastening of death, are suspicious of any reason that identifies the patient as a burden, and they have a point. Our society has always short-changed people who need extra resources they cannot afford themselves. As a country, we are absolutely stingy when it comes to providing an adequate social safety net.

But this concern may not apply to those who use Oregon’s DWDA. Other data in the DWDA annual reports indicate that around 98% of participants have health insurance, though there are a few whose insurance status is unknown. Over 90% were enrolled in hospice, an indicator that a payment source was available to them. About 62% had at least some college, with about 5.6% who did not finish high school. Those are general indicators that participants were working (or retired) and middle class with adequate financial resources. Fewer than 8% had never been married or in a registered domestic partnership. And the overwhelming number of participants–96.5%–were white.

Still, 55% were concerned about being a burden on family and caregivers. My life experience helps me to understand this concern, and I don’t find it the least bit troubling. It is a concern I have even though I am financially secure, with both excellent health insurance coverage and long-term health care insurance. There is a long tradition in my family of caring for elderly and disabled family members, even during times when financial resources were not as available as they are for me and my wife. One great-grandmother who needed round-the-clock care received it from her daughter, my grandmother, for several years.

Another grandmother always lived next door to a daughter and her family, and was frequently visited by her two sons and grandchildren. My other grandmother (who had cared for her mother) needed special help in the last few years of her life after having one leg amputated. She received that help from three of her children, two of whom lived within a few blocks of her, and who had her small home renovated to accommodate her needs while she was in a wheelchair. She continued to cook and sew for herself and have some of her other needs met by family until her death.

A widowed aunt with pancreatic cancer was cared for by her three adult siblings for over three years as the disease gradually debilitated her, leading to round-the-clock support during the last six months of her life.

My own parents, in their mid-80s, readily accepted an invitation to move in with me and my wife after we built a completely handicapped-accessible home in which we could be comfortable after retirement. Mother was hampered by severe arthritis and dad had been diagnosed about ten years earlier with Alzheimer’s. After he needed a wheelchair because of broken hips, the commercial handicapped shower we had built into their bathroom proved to be an excellent decision. It also meant that mother had a permanent, fixed shower seat, which she needed when she showered.

A cousin, who had a child with cognitive difficulties and cerebral palsy, cared for her into adulthood before she was able to live in a special facility that met her needs. Another cousin had a child with Down syndrome who was cared for in their home for his entire life. And another cousin cared for her invalid mother for many years until she became physically unable to do so.

In a more recent example, a close relative who was diagnosed with Stage 4 metastatic breast cancer nine years ago has been cared for by several relatives, primarily her daughter, who has a young child with another on the way.

Not all families have been able to manage to care for disabled family members as well, over several generations, as members of my family did and continue to do. There are myriad reasons why this could be true. Potential caregivers may not physically be able to undertake such responsibilities. They may not have adequate accommodations. There may be emotional reasons that prevent them from taking in sick family members. There could be financial costs that prevent such an arrangement. In some cases, the needs of the disabled family member could be beyond the skill level of anyone available to provide needed care.

My family tradition of caring for close family members with disabling conditions has happened, and happens with many other families, to some extent because each generation has kept up close ties and often lived near one another or could make arrangements to do so. They have found ways to care for family members even though they did not have high incomes, and some had very modest financial resources.

Often, a family caregiver (usually a female family member) was not employed outside the home and was available during usual working hours. But never was I aware that any of these caregivers considered the care they provided family members a burden. They did it out of love and, perhaps, a sense of duty, though in some cases, they faced circumstances that made it necessary eventually to rely on institutional care in nursing facilities or group homes.

Still, if I develop a debilitating condition that prevents me from doing what gives my life its significance–reading and writing by some means, having intellectually-satisfying discussions with friends and family, maintaining emotionally meaningful relationships, and providing some help to those I care about–I do not want to continue to merely exist. At that point, I consider that life as I want to live it, i.e., with cognitive competence, will be over. I see no good reason to rely on my family to continue to live under such conditions. I would see that as being a burden on family members. And those are sufficient reasons to hasten my own death by whatever means might be available to me, a decision that is mine and mine alone, though I am certainly willing to discuss it with family members and friends.

Norman Cantor, Distinguished Professor of Law Emeritus at Rutgers University School of Law, addressed these issues in his own advance directive :

This wish to hasten my post-competence demise is not based on prospective suffering or distress, but rather on my personal vision of intolerable indignity and degradation associated with cognitive dysfunction.  For me, it is critical to shape the post-mortem recollections of my loved ones and to preserve the lifetime image as a vital, critically thinking individual that I have strived to cultivate.  In addition, it is important to me to avoid being an emotional, physical, or financial burden on my family and friends, even if they would willingly assume such burdens.

If family and friends can willingly carry the burden, I see nothing wrong with being a burden on family and friends. Likewise, there is nothing wrong with choosing not to be such a burden. Anyone who has had major surgery has been a burden on those closest to them for relatively brief periods. It may be from such experiences that I am able to understand both sides of this issue. During such times, I have continued to live a meaningful, if an uncomfortable, life, but I knew that life would not always be that way. I could look forward to physical recovery, and I never lost my ability to do those things most important to my life.

If I do reach this latter point, it is not axiomatic that “being a burden” should be seen as an unacceptable or degrading choice. But it should be my choice, in spite of what anyone else may think about it.