On the dignity of being a burden

My candidate for one of the most unhelpful (although well-meant) comments patients make in the discussion of end-of-life and other care issues:

“I don’t want to be a burden on anybody.”

Why unhelpful? Because we can have very little control over whether we will become a burden. A burst aneurysm, a car accident, or some other unforeseen event, and wham! we’re a “burden,” dependent upon others, through no fault or planning of our own. And people somehow have got the idea that being dependent on somebody else diminishes their dignity.

But not only is this not a Christian idea, it is an anti-Christian idea. Maybe so many Christians cling to it because we were raised on the pious-sounding but non-Bilblical nostrum that “God helps those who help themselves.” Or maybe it’s because we have appropriated the assumptions of our independent, individualistic culture. Whatever the reason, John Stott provides a powerful corrective in the final book he wrote before his death, The Radical Disciple (IVP Books, 2010). In the chapter on “Dependence” he points out that we all come into the world, and most of us leave it, dependent on the love and care of others (pages 110-111). “And this is not an evil, destructive reality. It is part of the design, part of the physical nature that God has given us.”

He continues, “I sometimes hear old people, including Christian people who should know better, say, ‘I don’t want to be a burden to anyone else. I’m happy to carry on living so long as I can look after myself, but as soon as I become a burden I would rather die.’ But this is wrong … the life of the family, including the life of the local church family, should be one of ‘mutual burdensomeness.’ ‘Carry each other’s burdens, and in this way you will fulfill the law of Christ’ (Galatians 6:2)

“Christ himself takes on the dignity of dependence. He is born a baby, totally dependent on the care of his mother. He needs to be fed, he needs his bottom to be wiped, he needs to be propped up when he rolls over. And yet he never loses his divine dignity. And at the end, on the cross, he again becomes totally dependent, limbs pierced and stretched, unable to move. So in the person of Christ we learn that dependence does not, cannot, deprive a person of their dignity, of their supreme worth. And if dependence was appropriate for the God of the universe, it is certainly appropriate for us.”

Safe Passage

I came across this description of the duties of a physician, from an 1858 lecture to medical students:  diagnosis, treatment, the relief of symptoms, and the provision of safe passage.

The provision of safe passage struck me as a concept we would do well to rehabilitate.  It is an evocative phrase:  protecting and helping someone on a long voyage.  That is generally not how we are taught to think about death in medical school.  Death is failure!  It is a cliff, a precipice to be avoided, rather than a voyage that everyone ultimately has to make.  We have a tendency to approach the precipice in one of three ways:  most often, we try to keep the dying patient from falling over the edge, wrapping them up and pulling them back  from the brink with ventilator hoses and feeding tubes and intravenous drips and every heroically inappropriate medical intervention and test we can conceive of;  or we realize that there’s nothing we can do, so we abandon them;  or, increasingly, in the name of “compassion,” we push them over the edge with physician-assisted suicide.  What a difference it could make if, instead of treating death as a precipice from which we attempt to keep a patient indefinitely, we understood death as a voyage each person will have to make.  What a difference if, instead of being trained to stave off the inevitable at any cost, doctors were trained to recognize — and to help patients recognize — when the voyage is approaching, how to help patients to prepare for it, and how to help them to make it a “safe passage,” a good death for them and their families.

 

Love and Respect

A fellow family physician who cares for people at a clinic in Central America wrote about the death of one of her long-time patients in an e-mail last week.  The woman came to the clinic barely able to breathe and with her heart failing.  As they tried to stabilize her to take her to a hospital for further care, she knew that she was dying and requested not to be taken there.  She said “I want to die here, with the people who loved and respected me, my clinic.”

She expressed the understanding that there are some things that are more important than having the ability to treat diseases effectively and extend people’s lives.  We should strive to provide high quality, effective medical treatment, but caring for people is more than that.  It includes loving them and showing them respect as sisters and brothers in the human family.

All of our patients eventually die.  When they do will they know that they were loved and respected by us as we cared for them?

Lessons from the life of Joseph Maraachli

If you haven’t read the news reports, Joseph Maraachli is a little boy with Leigh syndrome.  The degenerative neurologic disorder left him on a ventilator in a hospital in Ontario.  His parents requested that he have a tracheotomy to allow him to be cared for at home like his older sister who had died of the same disorder several years before.  Joseph’s physicians and the hospital where he was in Canada did not think the tracheotomy was in his best interest and obtained a court order to remove him from the ventilator to allow him to die.  In March he was transferred to a hospital in St. Louis against the wishes of those treating him and on March 21 he had the tracheotomy, described by his physician in St. Louis as a common palliative procedure.  Within three weeks he was able to be weaned off the ventilator and was able to return home with his parents on April 21.  His life expectancy at that point was about 4 to 6 months.

What can we learn from Joseph’s experience?

It seems that those of us who are physicians sometimes feel that our training and experience allow us to know better than others what is best for our patients.  We need to remember to listen to those who know our patients best.  Sometimes parents really do know what is best for their child.

It also seems that when people disagree on what is best it is better to err on the side of life.

Ethics Ruminations from the Front, #1, Carolyn

John Kilner is one of my heroes—brilliant, erudite, engaging, willing to take on today’s ethical challenges. He also was my mentor while doing graduate study. I owe him. So, when he asked if I would consider working on a CBHD ethics blog, I didn’t hesitate—very long anyway—to agree.

I am a neurologist, active in a busy clinical practice. Additionally, I chair a hospital ethics program. My third job is as a group practice medical director supervising approximately 70 doctors in their work. My parents were missionaries. I am happily married and we have three of the world’s most beautiful, intelligent, grown children. I hope to reflect on life from these perspectives.

Carolyn

Carolyn was a dynamic, energetic, intelligent woman who ran libraries, administered programs, taught college students, and in a good way was always a force with which to be reckoned. She retired in her late sixties, still near the top of her game.

These days, at age 84, she lives in a nursing home, is doubly incontinent, wheelchair bound and often confused. She misses social nuances, and usually does not know the correct day. She doesn’t ask for assistance, she barks out orders. She is nearly deaf, and says embarrassing things to her family members during quiet moments at social functions. Her goal each morning is to make sure that someone lays out her clothes for the day. Not knowing what she will wear on wakening weighs heavily on her, but this burden is relieved by seeing the pants, T-shirt, (she no longer wears a bra), shirt and sweater (she’s always cold), on her closet door.

She has a Kleenex and Vaseline lip balm obsession, and can’t be without either of these. She cannot carry on a conversation.

What a tragedy, some would say. She will die without dignity, having lost her intellectual faculties, control of her bodily functions, her sense of humor, and her social skills. Isn’t her continued existence a waste? We could use Carolyn as a poster child for why we should allow mercy killing, some might say. She is using up financial resources and her loved ones’ limited time and energy. She is directly helping no one, and each of her days is just like the last.

Her son notes that as deaf as she is, she never wants to miss church. She has lost her singing voice, but she hums or softly mouths lyrics to the hymns. She grouses and commands, but she often eventually says thank you. She doesn’t read scripture anymore, but she completes verses aloud that others start. Whenever she sees him, the first question she asks is about his wife and her health.

He relates that his daily visits with his mother remind him that it’s not about him and that God uses hard times to grow our patience and character. He remembers the untold hours of teaching, care and prayer she poured into his life, and realizes that he could never repay this debt. He has come to realize that God wants his children to grow more and more into God’s likeness, not have easy, fun lives. He reflects that his mother may be helping him grow closer to God now than she ever did when he was a child, a young adult, or even a middle-aged man. The son is in no hurry to see Mom go home to be with Christ. He has come to see that God’s timing is best, and that God doesn’t abuse his children. More than ever, he is learning that God is all-wise, all-powerful, and all-loving.

I am Carolyn’s son.