It was early on February 15 that I started writing this article, for it turned out that my wife June and I spent a considerable amount of time thinking about death on Valentine’s Day.
Our Sunday School class discussion that morning as well as the movie we watched that evening were both about death. We also were sad to hear that two people in our circle of acquaintances had died that day.
Death
in “Fidelity”
On
the morning of Valentine’s Day, the Sunday School class had a long and fruitful
discussion of “Fidelity,” Wendell Berry’s short story first published in 1992.
It centers around the death of an 82-year-old man—the very age I am now.
In
that intriguing story, Burley is seriously ill, so his family and neighbors,
wanting to do something for him, take him, without him being able to give his
assent, to a hospital in Louisville where he is hooked up to all sorts of
life-lengthening devices. But he was deprived of his right to die with dignity.
Death
in Blackbird
That
evening we happened upon Blackbird, a 2019 Prime Video movie that we had
never heard of—and which was panned by the movie reviewers we read after we
watched it. But we thought it dealt with the planned death of Lily, the central
character, in a thought-provoking way.
Lily
has a serious degenerative disease. It seems that soon she will lose all
ability to function as a normal human being, likely even to lose the ability to
swallow. Before that happens, she wants to have an enjoyable weekend with her
family and then drink the lethal potion procured by her doctor husband.
Choosing
death with dignity rather than having to suffer and/or to exist in a prolonged
vegetative state is the issue in this movie, similar to that of “Fidelity.”
Death
Control as Well as Birth Control?
Contraception,
commonly called birth control, has long and consistently been opposed by
the Roman Catholic Church—and in recent decades by an increasing number of conservative
evangelicals. But birth control is legal and widely practiced in the U.S. and Europe.
Has
the time now come for wider acceptance of, and more legal provision for, what
might be called death control? Note that whereas birth control is taking
means to prevent pregnancy/birth, death control as I am using the term here is
taking means to hasten death.
Death
control
is not a widely used term—and sometimes it is employed to refer to efforts to
prevent death just as birth control is a term used to prevent pregnancy/birth. But
I am using the term to refer to suffering, terminally ill people taking the
initiative to end their lives.
Of
course, there are strong religious and ethical arguments against all forms of
death control. Again, the Roman Catholic Church and conservative evangelicals
are at the forefront of that opposition. Birth and death should be completely
left to God, they say, and humans should yield to God’s will.
Similarly,
there was a time when it was widely thought that vaccines interfered with the
natural order, or the divine order, of things and should be spurned. For that
reason, in the 18th century U.S., some religious people saw vaccines
as “the devil’s work.”
In
much the same way, birth control opponents through the years have also seen
using “artificial means” to prevent pregnancy to be attempts to usurp God’s
work in creating new human life.
The
Roman Catholic Church, for example, teaches that using contraception is
"intrinsically evil," for it gives human beings
the power to decide when a new life should begin whereas that power really belongs
to God.
Death control is staunchly opposed for the same
reason: the power to decide when life should end, they declare, also belongs
only to God.
But for those who see no ethical problem with birth
control, or vaccines, shouldn’t the prudent use of death control also be
considered ethically permissible?
(I am planning to post more about this controversial
topic on March 5.)
It seems to me to be fully religious superstition to believe that birth and death are to be left entirely to chance because it’s under God’s control. It’s a remnant of pre-Enlightenment thinking. Beliefs like those lead me to wonder sometimes if the New Atheists aren’t right—that religion is inherently bad.
ReplyDeleteAnton, I agree with your first two sentences, and I can understand why you and so many others wonder about what you said in the last statement. But you know well that there are many different forms of religion and that it is not fair to consider that "religion" in its totality is either "inherently bad"--or inherently good. It fully depends on which religious ideas or practices are being considered.
DeleteAs you know, I wrote a book titled "Fed Up with Fundamentalism," and it was largely a criticism of "pre-Enlightenment" Christianity. But, again as you know, there are other forms of Christianity, some of which have no problem in affirming birth control, vaccines, and perhaps increasingly "death control," that can be affirmed and broadly appreciated by thinking people.
I agree with this comment received from local Thinking Friend Vern Barnet:
ReplyDelete"It seems presumptuous when folks claim to know God's will for us is to choose unnecessary suffering."
"Death with dignity" or "assisted suicide" may be a friendlier way to phrase this, but "death control" is an interesting concept. Wikipedia has a long article: https://en.wikipedia.org/wiki/Euthanasia. Thanks, Leroy, for raising this subject. We are hosting a friend in our house who is under hospice care, which may be classified as palliative care or passive euthanasia. Our medical friend at church has probably thought through this subject in some depth.
ReplyDeleteThanks for your comments, Phil, and yes, I would like to know what our medical friends at church think about this.
DeleteBut as I will be saying in the adult class on Sunday morning and writing about in my March 5 post, in spite of some overlap, "death control" is different from "assisted" or any other type of suicide and also different from euthanasia.
Just last February I was privileged to be in a study at Boiling Springs (NC) Baptist Church led by Dr. June Hobbs of Gardner-Webb University.
ReplyDeleteIt was entitled “Let’s Talk about Mortality.” I recommend the book she used with us:
*Being Mortal: Medicine and What Matters in the End* (2014) by Atul Gawande.
Thanks for continuing to raise awareness of pressing issues (even perennial ones) for our time.
Shalom, Dick
Thanks so much, Dick, for your comments that included your recommendation of a book that as far as I can remember I had not previously heard of. Soon after reading your comments, I saw that my local library had an electronic version available, so I have that on my Kindle now and I look forward to reading some of it later today.
DeleteHere's a link to my review of Gawande's book which I agree provides an insightful discussion of attitudes toward dying.
DeleteThanks for posting the link to your review, Clif.
DeleteHere are comments from Thinking Friend Truett Baker in Arizona.
ReplyDelete"I really appreciate your courage in dealing with such a controversial and 'dark' subject. There needs to be more open and honest discussion about the subject we have called euthanasia. I was somewhat surprised you didn't use the word in your very helpful blog. As you know, some of our states have approved this practice and several European countries have as well.
"I'm not sure how birth control can be misused but I am quite sure voluntary death could be. It seems to me that when all hope is lost for recovery and an individual is suffering, with no hope of remission, that euthanasia should be considered. Certainly there should be medical guidelines and family consensus, for making such an important decision.
"Our history is full of examples of disapproval for dealing with new ways of managing life even though God has given us minds and hearts to deal with life's unending list of challenges.
"I hope we can have more discussion about this very important subject. We give God too much credit for making decisions He has given us the ability and responsibility for making."
Thanks, Truett, for your thoughtful comments.
DeleteAs I plan to write about in my March 5 post, there is an important difference between "death control," as I understand it, and euthanasia--and the latter is more problematic.
Yes, I look forward to more comments from Thinking Friends about this blog post and the upcoming one planned for March 5.
Another insightful local Thinking Friend, Rob Carr, a retired pastor, send these brief comments a couple of hours ago:
ReplyDelete"The birth control/abortion debate has often hinged upon the matter of 'conscience.' Those in the pro-choice camp talk about making space for women to exercise their conscience and the need to trust women with this decision.
"Perhaps the same should be said for us all, facing a terminal illness."
Greg Brown is a local Thinking Friend who is also quite insightful. Here are brief comments he sent this morning:
ReplyDeleteLeroy, I would answer your last question with a pretty strong yes. Like abortion, this is a complicated issue, but I believe ultimately it must be left to the individual, perhaps with input from his/her family. One size does not fit all here, so legal prohibition is not appropriate."
Thanks, Greg, for your comments.
DeleteI purposely didn't make any reference in my article to abortion, as affirming birth control is seen by some as being a slippery slope toward approving abortion. But, yes, I think both issues are complicated--and controversial. And as one who strongly believes in human freedom, I think there needs to be room for both, and I am glad, but not surprised, that your answer to my concluding question is a "pretty strong yes."
And here are significant comments from local Thinking Friend Susan Miller:
ReplyDelete"Having served as a hospice chaplain, I have had this same discussion with many of my clients who were diagnosed with a terminal disease. At least 25% of them have wished they could have been given a lethal death control pill. Not only did they not want to suffer, they didn’t want to put their family and friends through it. They also didn’t want to go through the loss of the ability to care for themselves. For many, their struggle imposed much emotional, spiritual and mental anguish. For all, they just wanted to 'go out' with dignity and grace.
"I admit, I understand their perspective and desire. I watched both my parents and my aunt die from dementia. I’ve watched countless die from cancer and ALS, these deaths were prolonged and painful. Drugs were given to control the pain and symptoms, prolonging the inevitable. Many of these people had signed living wills and DNRs, but none were given the opportunity to choose death on their terms.
"Quantity of life over quality of life... which is ethical?"
Susan, I much appreciate your helpful comments, sharing important insights from both your professional and personal experience. What you said at the end of the first paragraph was exactly what Lily, in the movie "Blackbird" thought.
DeleteThe dementia issue is a tough one, for "death control" is primarily based upon the prerogative of a terminally ill person who chooses to end their own life. But those who have dementia, which my mother also had, are not capable of making that choice. But at least those with cancer, ALS, or other debilitating and terminal illness should, in my opinion, be able to hasten death rather than to have their physical life extended to they die without dignity or grace.
In my mind, quality should always be given precedent over quantity.
And here are lengthy comments from Charlie Broomfield, a local Thinking Friend and good personal friend who is a year or two older than I:
ReplyDelete"Obviously, it is an extremely difficult subject and a very personal one as well. I’ve had to deal with it in my life with losing my Mother and my Father at a fairly young age and then losing two wives to cancer.
"Then, in my legislative lobbying days I really got involved in the subject you are writing about. One of my several lobbying clients was the Midwest Organ Bank, an organ transplant agency. I had been involved with their predecessor organization, The Kidney Foundation, early in my career in the 1960s and began lobbying for them in the early 1970s.
"One day, I got a call from my boss, Larry Kist and he said, 'Charlie, we need to get a law passed in Missouri defining specifically what death is.' You can guess my response. 'What?' I thought. 'Hxxx, people die all the time. You mean we don’t have a legal definition of it?'
"Well, we actually did. The old law said that a person was alive as long as air was respirating through the lungs and blood was circulating through the body, a person was 'alive.'
"The problem was, both these processes could be continued by/through newly invented machines, even if an individual had had their head cut if, if they could quickly be hooked up to the proper equipment they were still alive. In fact, this had been happening for a few years and doctor’s had been retrieving kidneys from cadavers for transplantation.
"In fact, several transplant surgeons in St. Louis were being sued for having killed people by 'unplugging' the machinery that kept the blood running and the lungs respirating.
"That was the beginning of a fairly new legal term: 'brain death.'
"We very quickly had our lawyers draw up a bill for introduction in the legislature. I found an ideal legislator to introduce it and I began to educate legislators on how and why we needed a new law to, define death.
"Believe it not, it took me four or five years to get that bill passed into law. I thought it should have passed the first year, but there was significant opposition 'behind the scenes.' After a couple of tries to get my bill out of committee, I realized what was happening.
"My old friend, Lou Defeo, who had 'lobbied' me when I was a legislator, was getting his Catholic friends on the Committee, to vote against letting my bill out of committee. Lou was the St. Louis Catholic Cardinal’s personal lobbyist and, of course, most of the legislators from St. Louis were Catholic. When Lou told his Catholic friends on the Committee, that, this 'is what the Cardinal wants,' (or does not want) that was the end of the subject. They had the votes on the committee to kill the bill.
"Once I learned who my opponent was and what he was doing, I developed my strategy to deal with it in the next legislative session, but once again he got the votes and I lost again.
[to be continued]
[Charlie's comments continued]
ReplyDelete"In such situations, one should 'never loose their cool,' but I couldn’t hold it back. After the hearing, I caught Lou outside in the hallway, (I might have even pushed him up against the wall) and 'read him the riot act.'
Might have even given him a cussing. I told him that I was working to save lives; trying get people transplanted with new organs so they could live longer by using the organs of deceased individuals and so on.
"To Lou’s credit, he did 'keep his cool,' and when I settled down, he told me that the position he represented was positively the historic policy of the Catholic Church. I told him that had to be damn lie and I could not believe it. He told me that he would prove it me. I still didn’t believe him!
"Sure enough, a week or two later, he stopped me in the hall and handed me a large envelope. A while latter, I opened the envelope which contained somewhat of a different type of paper and writing that that was unfamiliar to me. However, it was written in English and I could tell that it must have been interpreted into English from a different language.
"Here is my interpretation of what I read. The paper stated it was indeed, the policy of the Catholic church that an individual had to suffer as much as the person and body could suffer, before death, so that that person's soul would qualify to enter heaven. Anything that interrupted, postponed or stalled that suffering to the end, disqualified that person, or that person’s soul from going to heaven. It was at that point that I finally realized why Catholics appear to be so opposed to suicide.
"Looking back, that was some 50 years ago, I now realize that that lesson probably continued to add to my questioning of the multiple ignorant principal beliefs that I was exposed to in my old Harlem (evangelical/ fundamentalist) Baptist Church.
"Now back to your question. One of my best friends from my old Harlem days, aged 89, has a wife that has been expiring with Alzheimer disease for over 8 years. For the past four years, she has been more or less in a vegetative stage. Frankly, I cannot accept that an all-powerful loving God would permit, or allow such conditions to exist."
Yesterday afternoon I received the following comments from Thinking Friend Glen Davis in Canada:
ReplyDelete"A quick note. Here in Canada we have had a Medical Assistance in Dying (MAID) law for several years. We are now debating an expansion of that law to allow such assistance whether the person’s natural death is reasonably foreseeable or not. My brother tried to get medical assistance 3 years ago but the process had so many requirements that he died a terrible death after much suffering from asbestos lung cancer before he could get what he wanted."
Thinking Friend Tom Trullinger in rural northwest Missouri wrote to ask,
ReplyDelete"Death control; does that include pre-arranged and documented assisted suicide?"
Thanks for your question, Tom. Yes, "death control" includes "medical assistance in dying," such as my Canadian friend Glen mentioned above, but the word "suicide" is now used less and less by the medical profession in this connection. (I plan to write more about this in my March 5 blog post.
DeleteHere, though, is one quote from the website of DeathwithDignity.org:
"Medical, health policy, and mental health professionals recognize that the terms 'suicide' and 'assisted suicide' are inaccurate, biased and pejorative in this context. Increasingly, mainstream medical, mental health and health policy organizations have adopted the terms 'aid in dying' or 'physician-assisted dying' to refer to this choice."
Here is the succinct answer Thinking Friend Virginia Belk in New Mexico makes in response to the question I posed at the end of the post:
ReplyDelete"Yes, I believe it should."
Bro. Leroy,
ReplyDeleteMy son once called me a closet Democrat because I agreed with multiple issues championed by many in that camp. You also know me as one the raving fundamentalists because of my stand on sexual identifications and lifestyles.
In your response to Anton Jacobs, you at least implied thinking people would agree with you. In that I do not agree with all you say on this subject, does that make me not a thinking person? I hope you do not consider that the case.
On to the subject, I hope you will clarify the difference in the terms used by you and several of your responders: death control, suicide, physician-assisted death, etc. Is a person's action in having a doctor provide a way to die any less suicide than the actions of a church member's brother who chose a gun instead when dealing with his own incurable disease? As to the criticism that assisted death is playing God, medical intervention of any kind could be considered playing God.
I have little personal confusion in the matter of birth control. We do need to keep a clear distinction between conception control and birth control. Where there is effective conception control, there is far less need for birth control.
The matter of ending life after it is recognized as an independent individual is different. My father lived with arthritis that left him in a wheelchair or bed under heavy medication the last eighteen months of his life. He died at 95 years of age, but repeatedly said he wished he had died at 85. I did not want him to suffer, but I would have had a hard time saying his life should end when he never wished he could voluntarily end it himself. This truly is a difficult issue that involves so many varied situations.
Thanks for your candid comments, Tom. I appreciate you taking the time to write and share your ideas.
DeleteFirst, let me set the record straight: far from considering you a "raving fundamentalist," I consider you one of my most important Thinking Friends and a man of integrity who seeks to be intellectually honest while maintaining a robust Christian faith.
As to what I wrote in response to Anton, an astute local Thinking Friend and a good personal friend: he was wondering if religion (including Christianity, of course) was "inherently bad" and should be spurned by thinking people--and he is a very thoughtful person. So that is why I tried to point out that there are Christians who have ideas on the matters under discussion that "can be affirmed and broadly appreciated by thinking people." I certainly did not mean to imply that all thinking people would, or must, think the same way.
With regard to the matters/question in your third paragraph, please wait for my answer until I post the blog article planned for March 5.
I assume that your fourth paragraph is primarily about abortion, which, granted, some may consider a form of birth control. But in this blog post I was using "contraception" and "birth control" as being synonymous. Abortion is a related, but separate issue from what I was dealing with in this article.
With regard to your last paragraph about your father, whom I knew well (as of course you know), and respected, when he was a vigorous, middle-aged man, if he never wished that he could end his life himself, there is nothing that you could, or should, have done in that regard. "Death control," as I am using that term, is about those who are terminally ill having some control over when and how they will die--with dignity--and not about controlling how other people will die.
"Raving fundamentalist" is a satirical self-designation as I see my position on some topics far to the right of some of my more liberal acquaintances. I have not gotten that impression from you. How any human life should end at any time will long be in discussion in a free society.
DeleteThanks for commenting again, Tom. I assumed what you have explained here, but my responses are often more for others reading the comments than for the person commenting. Most of my blog readers do not know you as well as I do. And I hope you know that I always appreciate it when you take the time to post your comments.
DeleteHere are comments received yesterday from Thinking Friend Dick Horn in Texas and posted here with his permission:
ReplyDelete"I read your article with interest. I'm only 81 but I have given a great deal of thought to death control. Having the experiences of watching [my wife] Joanie's parents suffer and die and suffer as they died. In addition I watched my Mother and my Grandmother as well as my youngest brother die slowly and in agony along with intense suffering.
"I would have to say that I have considered alternate ways. My personal favorite, although I would need the cooperation of one of my sons is to go to the top of our favorite ski area and from the top just go down the back side into the wilderness area. They aren't sold on it but I see some common sense in both Japanese and American Indian cultures.
"Nothing firm here but it is an interesting topic and I look forward to hearing where you come out on the subject."
Thanks, Dick, for sharing your ideas/thoughts about this important topic. You have had more direct experience with losing loved ones to slow, painful deaths than I have had. My mother died after several years of increasing dementia, but she didn't have much physical pain in the years/months before her death at age 94. My father died at age 92, but he drove to church as usual on a Sunday evening, got sick in the night and was hospitalized on Monday, and then died on Thursday morning, still lucid and joking with the nurses in the hospital. That is the way I would like to go, but that is not what my father planned, it just happened--and who knows what will happen in my, or June's, case?
DeleteI was intrigued by your "personal favorite," but freezing to death doesn't appeal to me. I'd rather have a family gathering and then drink the "lethal potion" as Lily did in the movie I mentioned. But there is not a "medical assistance in dying" provision in Missouri law--yet. Maybe there will be if I/we live long enough.
Here are interesting comments local Facebook Friend Jim Wood posted on FB after I linked to this blog article on Facebook this morning:
ReplyDelete"I agree that birth control measures are necessary since I believe that our sexuality is the most powerful expression of our being. And that planned death for some should be allowed. It is wrong for anyone to pretend to know the workings of our Creator, and to use Scriptures to prove their point. To love a pet as one might love a human and then put that pet to death when necessary is double speak. One’s view of God dictates one’s view of life and one’s view of life dictates one’s view of God."
Jim, thanks for your comments, which I keep thinking about. Is the reason people can and do put their beloved pets "to sleep" because pets do not have "sanctity of life" as humans do--or because they are less willing to allow pets to suffer?
Deleteこんにちは。フェイスブックでの補足のコメントです。科学的成果をどう神学的に位置づけるかと言う問題ですね?私は、保守の立場ではありませんが、厳格な保守的立場の人たちの意見、例えば、カトリックや福音派保守の人たちの意見は貴重なものだと考えます。科学の成果は一つの仮説であり、例えば、進化論などですが、アップデートされていくものであると考えます。そういった意味では神学も科学の一分野だと思います。私の個人的な意見では、科学の成果を享受するかどうかは個人の判断にゆだねられるべきものだと考えます。科学によって不用意に命の問題を扱う事、解決しようとすることには批判的です。例えば、ワクチンのことですが、ワクチンを打つことによって成果がある場合もありますが、副反応と言う危険も伴います。最も、感染の問題は社会性がありますので、難しい問題だと思います。避妊に関しては、個々の事情を考慮して例外的に認めるべきものだと思います。先生も慎重と言っておられるのでそういう立場でしょうか。妊娠中絶に関してもバチカンは、反対の立場であると聞いています。しかし、この問題も強制的に妊娠させられてしまった人には、中絶の選択肢は残されるべきであると考えます。尊厳死に関しては、不勉強なので分かりませんが、当然ですが本人の意思ではない尊厳死は、絶対に認めるべきでないと考えます。ちなみに私の母は、肺がんで、末期だったのですが、本人の意思で、延命治療をしないでほしいと言う意思表示があったので、最後は、延命治療をしませんでした。色々と考えさせられる投稿をして下さりありがとうございます。次の投稿を楽しみにしております。
ReplyDelete柴田先生、貴重なコメントをポストして下さってありがとうございました。丁寧に読ませていただきましたが、応答そる時間がなかったのは、残念です。御免ください。
DeleteLocal Facebook friend Ellen Nichols posted the following comments on FB:
ReplyDelete"I look forward to reading your next installment. Do you consider Living Wills or Advance Directives and Healthcare Powers of Attorney to be forms of death control? It is certainly difficult to consider all the possibilities of how one's health can proceed."
Thanks, Ellen, for your comments and question. Certainly, "living wills" etc. are directly related to "death control," but I think they are only the first steps toward what needs to be done in states that do not have "medical aid in dying" laws.
DeleteLeroy, you or some of your readers may be interested in Canada’s “Medical Assistance in Dying” law (MAID for short). I don’t expect you to read all of this, there are a lot of links/references:
ReplyDeletehttps://www.canada.ca/en/health-canada/services/medical-assistance-dying.html
And here is a link to “Proposed changes to Canada’s medical assistance in dying legislation”:
https://www.justice.gc.ca/eng/csj-sjc/pl/ad-am/index.html
And here is a link to a CityNews article titled: “Doctors condemn changes to Canada’s assisted dying law as ‘reckless’": https://www.citynews1130.com/2020/11/28/canadian-doctors-oppose-maid/
Here are comments received this morning from Kevin Heifner, a medical doctor in Arkansas. I much appreciate him taking the time to send such helpful comments:
ReplyDelete"While It would be interesting for me to engage academically in the argument about what you term 'death control, I want to make a few comments from a more personal and practical position.
"Regardless of the terminology the matter you discuss is how I spend at least an hour of most of my professional days as a critical care nephrologist. So to me, this is a practical matter. My answer to the very last question you posed would be yes. It is past time that we engage this conversation in a more structured and consistent manner.
"The amount of resources wasted on inappropriate care and our inability to care with appropriate empathy for those at the end of their natural lives is shameful. A large majority of physicians I work with would agree with this sentiment. We have clandestine conversations along these lines daily. What has not occurred as for society at large to be willing to engage further along these lines, and I think that your blog post here helps draw attention to and facilitate such conversations. So your words are helpful."
"Certainly there are moral considerations worthy of deeper analysis and reflection around these matters. With that in mind, I can tell you that practically I would fall on an extreme which argues that the ways we are approaching end of life issues currently in US healthcare often are ethically askew .... because we do far too much which leads to the promotion of suffering rather than the 'saving of lives." This may sound like an extreme and indelicate/uncaring position. I do not see it that way at all. In fact, I often will basically lay down my ultimatum of personal ethics that says I will no longer participate in a particular healthcare scenario which I find to be medically unreasonable and morally unconscionable."
Here is a response to Dr. Heifner by Linda Schroeder, a local acquaintance from several years ago whom I am happy to have now as a Thinking Friend:
Delete"Bravo, Dr. Kevin! I agree wholeheartedly with you and applaud your courage in ‘practicing’ your convictions.
"And Bravo, Leroy! Thank your for initiating and sustaining the conversation. I look forward to reading the next installment."
Leroy,
ReplyDeleteI appreciate your thought provoking post and the many questions it raises. As you know, I work as a hospice and palliative care physician so I experience death and dying on a regular basis.
I'll start by saying that you and June have certainly thought about this subject more deeply, or at least more openly, than many. We still have an inherent fear of death in this country, if I can make a broad generalization. I've often wondered why that is but it might require space of a separate post.
I agree with the comments of Kevin that we've medicalized the dying process and often create situations of prolonged suffering rather than prolonging of life. It's very difficult to walk through an ICU these days and not immediately see and feel the impact of how medical technology has allowed us to squeeze just a few more ounces of "time to live" rather than "quality of life." In my daily discussions with patients and their families we often discuss the differences of quantity vs quality and how different medical therapies lend to one or the other of these seemingly dichotomous options. And I specifically point these choices out as dichotomous because it's difficult to achieve both quantity and quality of life, particularly when one is nearing the end of life.
But that being said, I still very much respect patient choice. Each individual is allowed choice about their medical care. Patients and families sometimes make bad choices, but they're allowed to do that. My job is often to help facilitate deeper thought about what the individual would want and how we create a medical plan that fits that goal. And many people do choose sensible options that limit suffering, honor the individual's dignity, and allow for a peaceful death. But not always.
The internal conflict for me is that it's appalling how much money we spend on the final weeks and months of life. There are numerous medical studies that show the high cost of care in the final 6-12 months of life, which is primarily due to extreme measures taken to prolong life. It's shameful that we focus so many resources on the reaction to impending death rather than in the preventive, life-preserving period that would have been years earlier in an individual's life.
It may be obvious that I'm a strong proponent of hospice care for terminally ill patients, which affords them the opportunity to be in their own home (when possible) for their final time of life. And ultimately to die at home if they so choose. In an ironic twist of fate, hospice care has been shown to not only improve the quality of life for terminally ill patients, but in some cases it also leads them to live just slightly longer (primarily because they avoid high-risk medical procedures or toxic therapies). When I read the story Fidelity, I couldn't help but think that if hospice care had been available for Burley the grief and burden on his son and family would have been greatly eased. He would have been allowed a natural death at home, surrounded by the people who loved him, and without the burden of machines connected to his body as he left this world.
Thanks so much, Ky, for taking the time to write such long and meaningful comments.
DeleteI appreciate your emphasis on the quality of life as opposed to just focusing on the length of life. Of course, patient choice must always be respected, but perhaps there needs to be more expansive "education" about "sensible options that limit suffering, honor the individual's dignity, and allow for a peaceful death." I think those words of yours are especially noteworthy."
I also think it is noteworthy that both you and Kevin (above), both as medical doctors, mentioned the expense of keeping people alive in the final weeks (or even months) of their lives. How many lives of children around could be saved and extended for years if resources were used for them rather than using "heroic measures" to extend the life for a few days/weeks of those who are terminally ill!
And, yes, for people such as Burley in Henry County, Kentucky, perhaps now hospice care is available as it wasn't when Berry wrote "Fidelity," which was published in 1992. Hospice care is certainly a step in the right direction, and I appreciate all that you are doing in that regard.