Death and Dying in the Land of Paradise

My father just turned 85.  He resides with my mother, who is suffering from Alzheimer’s disease, in an assisted care facility.  As I witness my father’s health gradually deteriorate, I wonder what it must be like to know that death is likely close-at-hand.  He is currently unable to accomplish tasks that I take for granted, such as bending over to pull up his pants, or making it to the bathroom in time.  Yet, even in his current state, it could be much worse.

A recent (October 17) ABC news report presents the story of Jeri Orfali, a promising software executive who, at 56, developed ovarian cancer.  Jeri and her husband of 30 years were living in Hawaii at the time of her death.  The report describes her final days of bearing “excruciating pain that was not helped by palliative care.”  According to her husband, “In the end I could see tumors coming out of her legs and in her neck,” he said. “Her legs were swollen and her stomach was so bloated, the cancer almost burst out of her. She couldn’t get her next breath.”[1]

As a result of the experience, Robert Orfali (the husband) would like Hawaii to legalize physician-assisted suicide.  In fact, apparently it was “legal” in Hawaii as far back as 1909 based on the following stipulation for PAS:

[W]hen a duly licensed physician or osteopathic physician pronounces a person affected with any disease hopeless and beyond recovery and gives a written certificate to that effect to the person affected or the person’s attendant, nothing herein shall forbid any person from giving or furnishing any remedial agent or measure when so requested by or on behalf of the affected person.”

As a result, advocates for PAS believe that it is now time to establish a legalized ‘death with dignity.’  Of course, the movement to support PAS has its critics.  The Catholic Church and other right-to-life groups fear the potential consequences of PAS and call for Hawaiians to resist PAS’s legalization.  Indeed, previous attempts to legalize PAS in Hawaii were overturned (by a narrow margin) through opposition groups.  Thus, there is a significant divide that pits those who fear the negative results of PAS against those who view end-of-life care as insufficient.

Frankly, I struggle with this.  As a Christian, I have strong convictions against taking matters into our own hands; PAS, I believe, is wrong from a biblical/theological standpoint.  Yet we live in a secular society, one that does not necessarily share my beliefs.  I would oppose the legalization of PAS in America, but I base my opposition on the view that God is sovereign over life and death.  Honestly, I can understand why a person without theistic principles would think that PAS should be permitted.

In next week’s blog, I will present some of my theological conclusions about death and dying.  In the meantime, what do you think are some of the strongest arguments against PAS outside of Scripture?


[1] Susan Donaldson James, October 17, 2011.  http://abcnews.go.com/Health/retired-hawaiian-doctors-test-102-year-physicians-assisted/story?id=14739855&singlePage=true

V.S.E.D.

 

Is it ever OK to refuse nutrition with the intent of killing oneself?

 

A story on The New York Times website tells of an elderly couple with health problems and early dementia whose greatest fear was ending up in a nursing home. As they saw themselves decline, they decided to take control of their death and stop taking food and liquid by mouth. The article details some of the hurdles they had to overcome in the practice of V.S.E.D. (Voluntarily Stopping Eating and Drinking). (I had no idea that such a practice was widespread enough to merit its own acronym!)

Their experience of going without nutrition is different than the experience of hospice patients, who often as they approach the end of life stop eating and drinking. Hospice patients do it because they lose the desire to eat and drink, as part of the natural progression towards death; it is not a conscious decision to die that motivates them to stop eating and drinking.

The difference between the typical hospice patient and the couple in the story is intent; and that difference makes all the difference. While I would never advocate forcibly feeding someone who was practicing V.S.E.D., and I believe it is completely within ethical practice for someone to refuse artificially administered fluid and nutrition (feeding tubes and other nutrition that is actually a medical technology/treatment), it seems to me that fasting with the intent of ending one’s life is equivalent to suicide. And while the ethical issues surrounding forcing feeding on such people are too problematic to make it supportable, that does not mean that it is an ethical choice for a Christian facing disability or death.

Euthanasia, mercy, and the Good Samaritan

Lately I’ve been discussing infant euthanasia with some of my online students.  They are impacted very strongly by the argument from mercy.  When they consider an infant who appears to have “hopeless and unbearable suffering” as referred to in the Groningen protocol used in the Netherlands they are convinced that nonvoluntary euthanasia should be allowed if not required.  Mercy includes a desire to relieve suffering and the argument for euthanasia says that suffering should be relieved even if that means killing the sufferer.

One of the clearest expressions of mercy in the Bible is Jesus’ parable of the Good Samaritan.  In answering a question about how to love your neighbor Jesus tells a story about a man who would be rejected by those who were listening.  He finds a man who is beaten and half dead and who has been abandoned by his countrymen.  If he were a dog or a horse it would have been appropriate to put him out of his misery, but instead the man cares for his wounds and takes him to where he can receive further care.  The man who cared for the other’s wounds is identified as one who showed mercy.

The mercy that Jesus described in the story and provided for others involved hands on care for the needs of those who were injured or ill.  It sometimes involved bringing people back to life, but it never involved ending those lives.  Paul Ramsey captured Jesus’ attitude well in his ethic of “(only) caring for the dying,” and those who followed in his footsteps expressed it as “always to care, never to kill” (see First Things, Feb 1992

When we can see the importance of affirming the inherent value of every human life and search for the way to care for those who are suffering including optimal palliative care without violating the inherent dignity of that person we can be like the Samaritan that Jesus identified as a loving neighbor.

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.

 

What’s in a name?

Interacting with students often reminds me of the importance of some very basic things.  Recently I was reminded of the importance of defining the terms we use in bioethics.  In reading reviews of case studies by some of my online students I saw how their unquestioning acceptance of definitions influences how they think.

The terms involved were “abortion” and “passive euthanasia” and the definitions were from a textbook by Lewis Vaughn that we use in the course.  Vaughn’s text, which I reviewed in the summer 2011 edition of Ethics & Medicine, is generally good at representing a wide spectrum of views on current issues in bioethics, but sometimes some less objective things slip in.

Abortion was defined as “the intentional termination of a pregnancy through drugs or surgery”, which sounds pretty straightforward.  From the way a student was using the definition in a case review I realized that the definition would include and equate abortion with such things as the induction of labor for the delivery of a healthy term infant or a C-section to save the life of an infant in distress.  The fact that an abortion is a termination of pregnancy that includes the intentional ending of the life of the fetus was left out.  That part of the definition makes a big difference.

Passive euthanasia was defined as “allowing someone to die by not doing something that would prolong life.”  That is how James Rachels defined passive euthanasia in his classic defense of active euthanasia that was based on there being no moral distinction between active and passive euthanasia.  What that definition leaves out is the idea that any euthanasia involves the intent to end another person’s life.  This definition of passive euthanasia includes all the times we allow a person to die by choosing not to initiate or continue any possible life-prolonging treatment, but there is a significant difference between allowing a person to die of his or her disease when treatment has become more of a burden than a benefit and doing something with the intent of causing the person to die.  Intending another person’s death is the key to what is wrong with euthanasia and leaving that out of the definition makes a big difference.

What’s in a name?  The difference between right and wrong.

Suicide Assistance for Sale

The Oregon Senate recently approved a bill to ban the sale of suicide kits.  It is interesting that this occurred in the first state to legalize physician assisted suicide.  The move was in response to the death of a 29-year-old Oregon man who suffered from depression related to problems with pain and fatigue and took his life using a helium hood suicide kit that he bought by mail order for $60.  The helium hood method of suicide was developed and promoted by Derek Humphry and the kit was sold by a follower of Humphry to whom he refers business.  Humphry, who lives in the same area in Oregon as the man who committed suicide, founded the Hemlock Society that was a primary force behind the passage of Oregon’s assisted suicide law.

Although the Oregon law he helped to pass limits physician assisted suicide to those with a terminal illness, Humphry made it clear in an interview with The Register-Guard, the local Eugene, Oregon newspaper, that limiting assisted suicide to those with a terminal illness is not important to him.  Speaking of this particular case, Humphrey said, “It may be very sad and tragic, but if this man had ongoing health issues and had struggled with that, I wouldn’t criticize his decision.  It was his right.”

The logic of assisted suicide is clear.  If we accept that ending the life of the sufferer is an appropriate response to suffering and that a person who is suffering should be able to request assistance to end his or her life, then there is no reason to limit that assistance to those whose suffering we think is intolerable or who are terminal or who request the assistance from a physician.  A mail order kit fits the logic just as well.

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.

Kaddish “I Am Here”

This past fall, I had the privilege of attending the Houston Symphony’s production of

A prisoner in a special chamber responds to changing air pressure during high-altitude experiments. 1942. Dachau, Germany

Kaddish.  The Kaddish Project seeks to commemorate the noble struggle of individual Holocaust survivors, including four who have made their homes in Houston.  Much of my research at Trinity focused on the concept of personhood, that we are more than just biological systems but instead are “someones,” persons.  I couldn’t help but think of this as I heard the chorus sing the song of the persecuted Jews: I am someone and “I am here.”  Though mocked and beaten in the streets even in the days before World War II, the Jewish people of Europe taught their children that they were of value even though others thought otherwise.  The soloists and chorus related the story of one survivor’s recollection of a concentration camp.  When the prisoners arrived, those under 14 years of age and over 65 were separated to the left and killed.  They were less than optimal for the German labor camp, so they were eliminated.  Kaddish led me to reflect on how physicians were a significant part of the German “Final Solution.”  They were the ones who deemed the crippled and deformed, the mentally deranged and deficient economic burdens.  That’s why I think that as we look for disease and perform technical procedures, it’s important for us to remember that our patients are someones who we must relate to and care for.

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.