I know there has been a lot written about assisted suicide, but this is in the category of a patient choosing to forgo treatment when he or she knows it will lead to death. It comes from a friend who writes about a relative, noting, "I think this is an interesting situation, with a lot of moral threads hanging from it." There are no children involved or living parents.
M (age in mid-60s) is stopping dialysis because his quality of life is too sucky for him to want to continue. He is legally blind and can't read or watch movies for more than a short time per day. As far as I know there is no physical pain. He did have a long time dealing with infection from a botched surgery, about a year, which might be influencing his thinking, but I don't know.
I have mixed feelings. He is relatively young, but I know you join me in wishing him the least painful way out. Neither I, nor you, dear readers, have a right to judge the actions of the patient. (Remember that Art Buchwald did the same thing?) Perhaps, though, we can offer advice to my friend as to how to handle the situation now and afterward, for he feels he will have to explain to other friends and relatives that he knew what was coming but could not reveal it.
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34 comments:
What is the patient's mental health status? We certainly do not have a right to judge, but an obligation to seek true understanding of their situation. Have they been approached as a diseased person?... Or as a person with a disease that has a litany of other considerations to make when assessing their wellness -- not simply a person with an illness. Craig Dietz might be an interesting example or source of inspiration (Google him).
If this person has been presented with all options and opportunities, then I, as said before, cannot judge. We should be thinking about whole person centered care, not simply "patient".
I apologize for not being able to provide more concrete examples, but the link between depression and disease is a well-studied and researched subject... that could shed some light for this person's care network / team.
I have diabetes. I was once in a diabetes support group with a woman who was 28 yrs old that had diabetes all of her life. She tried dialysis for two yrs, got extremely sick after each treatment, had a transplant that failed, went back on dialysis, and ended up blind. She decided, in consultation with her DRs andd psychiatry to end dialysis. She died an uncomfortable death, but it was her choice.
Reading the comment above, I am struck by how barbaric our system is, that people who are terminally ill have to end their lives in an uncomfortable death.
As they say, "you wouldn't do that to a dog!" And we don't -- do that to our domestic pets. Our pets have easy access to euthanasia when the time is right. Why do we deny our human friends the same easy transition to the great beyond?
Would someone like to respond to the question I raise, regarding advice for the surviving relative?
Funny you should say that, Paul, because I was just giving thought to that question before commenting myself. Of course the answer depends on the relative's individual situation and family dynamics, but I don't feel the relative (let's call him 'he') should have to explain anything - including that he knew about this ahead of time. If he was told this information in confidence, then he has to keep that confidence and one could argue that confidence should extend after death.
Let's put it this way; like any self-directed death, it's those left behind who are affected the most. The relative should take whatever course will most preserve his own relationship with family and friends, while maintaining the confidentiality with which he was entrusted. I don't see any moral imperative here.
nonlocal
My advice for the surviving relative -- First, a question: you love your relative, and want his death to be peaceful and comfortable?
If you want your relative's death to be comfortable, you may want to check out the assisted suicide organizations in Denmark. It is admittedly disgraceful that we need to fly our sick relatives to another country to obtain compassionate care, but it is what it is.
Then, if your relative is interested in that option, accompany him on his trip to Denmark, make his last days interesting and comfortable.
In other words, help your relative have the kind of death he chooses to have. He may choose an American prolonged and painful death, or he might choose to exercise more control over his final chapter.
"Knowledge" can be a tremendous burden, one that whittles away at the wet wood floor beneath which this secret lies beating.
This is the problem with "assisted" suicide. It's too neat and quick for the god-fearing moralists. Better that you'd witness the entire process of dying of uremia; you wanna git yer money's worth, don't ya?
I'm all for AS which I prefer to refer to as "Same Day Purgery."
There's an App for that...
Paul
My heart really goes out to this individual. One of my dearest friend’s mom has been going through dialysis for as long as I have known her. The quality of life is not what I would consider “quality” but she is surrounded and taken care of by her children and family. She has been in and out of ICU recently and I know how painful this has been for her and the family. She has refused the potential kidney transplant of her children because she doesn’t want to risk their health or future potential for them to be in her shoes. She is selfless – she puts the needs of others before her own – she hates being a “burden” as some might see it - She is a pillar of strength who inspires me not to complain. My friend expressed to me that they are constantly telling her mom how much they love her and dread the day that she won’t be with them. She is constantly reminded of her value to the family and that she is not a burden.
My advice - If it were me, and my family member were making this decision – I would express to them how much they mean to me – give my perspective on ending one’s life and allow them to make the decision. Then I would love them right to the very end – no matter what that end might be.
You can’t force someone to chose a path – you can only love them where they are today.
Thanks for posting this - it's really thought provoking.
Wait, this is not about assisted suicide; it is about end stage renal disease. Competent patients choose.
I think the main thing here is whether the dying individual is making a fully-informed choice (and, as an earlier post mentioned, whether s/he is capable of making reasoned decisions).
I have a close relative who's in a situation similar to the one described. Her numerous friends and relatives are saddened by her decision, but we recognize that the choice is hers--and she's had input and counsel from multiple sources.
She doesn't want to keep on "just existing," which realistically is her current situation. Blindness and overwhelming fatigue have sapped the pleasure from her life, and she's opted to discontinue dialysis and enter hospice service. (The hospice folks have assured her that preventing pain is what they do, and they have a solid regional reputation for just that.)
The link to the information about Art Buchwald was tremendously valuable. It will help us understand that the situation could well be one of months, not days/weeks.
From Facebook:
Kerry: I would intensely listen and be present to the survivor, to try to understand if the person just wanted someone to listen, or if the survivor was struggling with the person's decision, i.e., that the person who had died were no longer 'here' in a manner of speaking. My wife had a 31 year old friend pass on last week and was struggling with the idea that someone who had very much wanted to live was no longer alive. I suggested she be present to her friend's energy and form in its present state (I married an America version of Mother Theresa, really). This helped her. For someone else, I might have suggested something very different. If you are fully present to the grieving person, the likelihood of being able to help the person is much greater.
Amy: Paul knows my story. Helping someone I loved deal with the end of life decision was so very difficult.
You love a person, you never want them to go.
I realized in the end, that quality trumped quantity. I wanted quality for them, I wanted quantity for me, at that time, it was all about them. I had to set the emotions straight after.
It wasn't until I read the line, "Love doesn't die" that it really started to come together for me. I took all those emotions I thought I had to find a new home for and put them back in my heart, where they will live as long as I.
Kim: It must be an honor to be the confidant of someone who is struggling with the decision of what feels right to their very soul. I would feel proud to have been that confidant, to have simply listened, rather than feeling guilty for not having revealed what was coming. The listening is a monumental gift - for in some way, as you say, it is also a burden. Sometimes our greatest value as friends, parents, partners, caregivers is not in "fixing" the problem, but in merely being compassionate.
Amy: Love isn't a burden, it's a gift. What you do with it is your choice.
Kim: Not suggesting that love is a burden - but there are many burdens I am HAPPY to carry for those that I do love.
Amy: Exactly ♥ ♥ ♥ more for you bag.
BTW, I always thought Art Buchwald was brilliant, ballsey and in the end, brave. It took a few years to learn just how brave.
To this day I am grateful my Mother chose not to be hooked up to any machine, and that she and my Father discussed this in their marriage before she became ill. While the final decision not to put her through dialysis meant she would end up going into cardiac arrest (they told us this), Daddy made the decision she had asked for and it was difficult. I was there and holding his hand, and it was a moment in our lives that we will never ever forget or regret. RIP Mama, we miss u.
I would only say that they should honor their relative's wishes, but ask them to consider informing the entire family of at least their expected survival time. We (humans in general) do a poor job of visiting and supporting each other during the time we do have, and tend to procrastinate until the last minute, or miss out on opportunities. They should take this opportunity to share the life they do have with their loved ones.
That being said, and with zero knowledge of what has already been tried, I know some people who have had drastically different experiences on dialysis from different providers, namely the local one close to home made them feel incredibly drained, while dialysis in Florida (while on vacation) did not have the same effect at all. Perhaps this is a quality of care issue, in addition to quality of life?
Not sure how willing someone would be to 'shop around' for dialysis, but my understanding is that it can be very different indeed.
Why is it different when a physically ill person becomes depressed and suicidal, from when a mentally ill person becomes suicidal? The mentally ill person is protected from harming himself-- hospitalized, given therapy, antidepressants, etc. to help restore the will to live that is innate all of us. The physically ill person is told, 'yeah, you're better off dead, go ahead'.
This is a dangerous road to go down. Places where suicide is legal are rampant with other abuses, such as "suicide without patient consent". (Think about that?!)
Many organizations for the disabled have testified against legalizing this practice.
Distinguishing one person's quality of life from another's is the beginning of the utilitarian thinking that bred many horrors in the 2oth century. (Nazism, human experiments, etc.)
Paul, I would advise the family to spend more time with this person, take him in, to tell them they love and care for him, that quality of life is not the same as quality of health. The quality of your life really revolves around the quality of your relationships, not all the other physical stuff. And pain and suffering are not devoid of meaning.
I have found that much good comes out of the suffering in a person's last days. Relationships and hard feelings reconciled, regrets resolved, offenses forgiven. Better to go in peace, than in despair of life.
Best Regards, Mike
I completely disagree with you, Mike. Why should others pass judgement on your ability to control (or end) your own life? I know what you mean about the slippery slope and I understand about depression, but I believe if a sentinent person with a terminal illness chooses to end his or her own life or chooses to forego therapy such as dialysis, that should be their own decision and no one else's.
I frequently cite my brother with Parkinson's disease, who is an active, athletic person and does not wish to be disabled and dependent on others. (He has researched this and joined the Hemlock society.) He should be able to end his own life without putting his doctor and/or his loved ones at legal risk for agreeing or being with him or, should they choose, even assisting him. Now granted, he may change his mind when that time comes, but that too should be his choice.
To say "much good comes out of the suffering in a person's last days" has different meaning when you are that person suffering. I would challenge you to remember this conversation if you are ever in that position.
nonlocal
This is tough - I had a relative with cancer which I understood the long term prognosis of and ended up not mentioning that to any of my family. You suspect what's going to happen but let's be honest - we're all one car crash, one stroke, one heart attack away from eternity. So while your friend thinks he knows what is going to happen, he really knows what is likely. How can he be expected to talk about something like that when it is so difficult and when he can't really predict what will happen?
I would strongly recommend hospice for the patient. This signals to family and friends that the end is near without the friend having to reveal anything. The friend can choose to reveal anything they want to reveal and if they are of a medical background, might get a lot of mileage out of explaining what kidney failure does to the body and how it makes people feel. But he's not responsible for informing others of what's coming.
Paul,
I’m a little late to the item here but I wanted to share my experience. My sister had a lifelong history of heart and lung problems, beginning with a VSD that required open heart surgery in 1963 at Mayo Clinic, primary pulmonary hypertension, and issues with her heart chambers that her cardiologist would have to explain because I’m just a reporter.
In the early 90s, she was on a list for a heart and lung transplant. She faithfully went to the required meetings for transplant recipients, physical and emotional therapy, took the required meds, met her doctors regularly, carried her beeper everywhere and moved steadily up the list from the high 20s. But she always had reservations about the quality of life after the transplant between the recovery period, the required anti-rejection drugs and her limitations. Sometime in late 1992/early93, she got the call she was at the top of the list and they had a donor for her. She turned it down.
Like the overbearing and distraught brother who didn’t want to lose his sister, I asked her if she was effin’ nuts and repeated everything her doctors told her as well as all the research I had been finding regarding the procedures both before and after and how it would extend her life because, well, that’s what the doctors said it would do.
“Jack, do you know what the difference is between God and a doctor,” she said in her let's tell a joke way of always disarming me.
“No, tell me,” I said.
“God knows He’s not a doctor.”
Her body, her decision, her peace with everything around her. I wasn’t happy, but I understood. And in the end it was the right one for her. She lived about five more years, surpassing a number of people on the transplant list after her. She died while undergoing an ablation during a 10-hour surgery when she went into cardiac arrest while coming out of anesthesia. She had a DNR and her husband and doctors respected that. My other sister and I were there in the waiting room during the entire procedure and it was the most painful experience of my life, except for one thing: God knows He’s not a doctor. And that’s the advice I’d give the patient’s relative from someone who’s been through it.
I worked in a Massachusetts psychiatric hospital for 19 years. Staff there spent a lot of time and effort to prevent people from hurting themselves. If you save a life and it is a "mistake" (I don't believe that is possible, but let's say you do), you could always go back and undo it. If you take a life, there's no going back.
As a former clinical nephrologist, I always felt that one of the most important aspects of my relationship with patients and families was in being transparent and educational about all matters related to health and wellness, extending from the here-and-now to the planning process needed for a patient to prepare for his/her last breath. From Adam Smith’s “invisible hand”, I realized that for patients and families to actively participate in important health care decisions, I owed it to them to flatten the hierarchy and remove as much “information asymmetry” as I could. This led naturally to a belief that a person’s choices about whether to continue dialysis services or not should be in the hands of the patient and that my role was as a trusted advisor who could answer questions about what might be next in a sequence of experiences. I have been quite impressed about what value a patient experiences when he/she feels the care and compassion of a physician who is deeply engaged in helping that patient better understand what may lie ahead while working together to deploy strategies that address the physical, emotional, and spiritual needs of the patient and family. I would encourage your friend to feel the profound joy of being a great friend, having listened with compassion to the very human story of an individual facing one of the most important decisions of his life, and to sleep well at night knowing that he was “in the moment” with this individual. How others might perceive his having knowledge of the patient wishing to stop dialysis and not actively intervening, I would say that the patient has a right to discontinue dialysis, and the other friends and relatively have no right to force him to continue. The courage that it takes to remain a dialysis patient is overpowering at times; the decision to terminate the intervention is personal and belongs to the individual.
My mom was a nurse and made the conscious decision not to go on dialysis. She was diabetic, legally blind, and had congestive heart failure. She didn't want to get into an elder van and travel 1/2 hour 3 times a week and go to dialysis. We talked about it a lot and for her it was very much a quality of life issue. She chose to spend those days with friends, her family and grandchildren. She had another year and a half after that. The last four months were a struggle, but she faced death with a dignity and grace that I will never forget.. Never once did she regret her decision. She made an informed choice ...... I miss my mom!
I think it's interesting that M doesn't want anyone to know, while other people talked about here were open. I guess M doesn't want to talk about it with everyone who will try to talk him out of it. Why is he willing to put this burden of secrecy on anyone? I agree with nonlocal -- nobody has to know -- but also that it's not fair to put that burden on anyone.
www.kidney.org
click on "dialysis"
The more things change, the more they stay the same.
I published a paper, "Repeated Dialysis of Indigent Patients..." some years ago. Annals of Internal Medicine, 64:284 1966. The date is not a misprint.
In those early days we used permanently implanted arterio-venous shunts that were above the skin. Two of my patients 'accidentally' had shunts open when they were away from the dialysis unit and bled to death. Another, to whom I had become quite close, looked up at me one day and said, "Doc, if you can't make me feel any better than this, then lets quit this thing."
I moved from the practice of nephrology to a practice of general internal medicine not long after, for I couldn't make him feel any better. Dialysis is life-saving, but the quality of life? Each patient will decide for him/herself.
Each patient, too, has to decide how much value to put on quality, how much on quantity of life, and how to resolve the question when quantity of life can only be gained with sacrifice of quality...as with dialysis, but also with some forms of cancer therapy, for example.
So what can you say to a patient making these decisions? What can you say to family? The words don't matter. You're communicating two things...that you care, you really, really care. And that you understand the decision being wrestled with, and will support whatever decision comes down, regardless of whether it's the decision you, yourself would have made.
To Paul's and M's Friend, part 1:
Paul, please forward this guidance to M's and your friend.
Dear Friend,
I believe I can help you orient yourself to the conversations you know are ahead of you regarding M’s choice to die in peace.
I write as one who has, as a patient-family member, been involved in two terminal hospitalizations—those of my parents. The first was unavoidable; Mom experienced sudden respiratory failure, accepted intervention, and quickly wound up comatose and intubated in the ICU, where she died about three weeks later. Although there wasn’t much we could do, we authorized treatment with the goal of oxygenating her blood enough so that she could breathe. The attempt failed. Although three weeks is a short time, if felt long, and the entirety of the hospitalization was a bitter lesson for our patient-family.
The second—my Dad’s, 15 months later, was avoidable had only we known how death unfolds in hospitals. He could have chosen as he had previously stated, “no more hospitals” and died peacefully (his chronic cardiac condition lent itself perfectly to self-directed dying). Alas, this didn’t occur to me until several years later as I continued to parse our experiences.
The most useful aspect of self-directed dying to occur to me during my years of work on this (resulting in a book on it) has to do with heroic action and when it really begins. Stick with me here as the explanation takes a bit of time.
I asked myself why 90% of us say we want to die in peace but roughly only 10% of us do (defined as “at home”—e.g., not in a hospital, a bit of an oversimplification but it’ll do for our purposes now). I asked myself this in the context of Dad’s hospitalized demise, replete with MRSA, insufficient monitoring and treatment, the absences of “care,” and more, in a consistent stream from hospital admission through and including hospice intake.
For me it boiled down to this: we misconstrue what constitutes heroic action and when it begins.
Most of us don’t ever think to think about this. So, we first encounter it only at the latest and worst possible time: during what I’ve come to call the crucible of a (terminal) hospitalization. “Crucible” is a place of severe test or trial, where the pressure and heat is unremittingly turned up and there’s no escape. When thus in the crucible, our instinct is to fight for life and, if religiously inclined, to sanctify life by fighting for life. We carry this effort forth despite apparent or real futility because we think it’s only just begun, and thus doing so is instinctual, right, gallant, required, or holy (take your pick and mix ‘n’ match).
But what if we had already been acting heroically? When I considered my dad’s medical history and our family experiences, it was evident and obvious to me that Dad’s period of what I call heroicism (“a lesser form of heroism”—www.Unwords.com) began 19 years before his death, with his first heart attack and successful double bypass. He lived to see another day, year, decade. Long enough for a second bypass, a hip replacement, etc.
During these decades Dad, my folks as a couple of 60 years, my family of origin, our extended family, the communities in which the folks lived, and even the IRS benefitted from Dad’s longevity, compliments of medical science.
When we understand that heroicism has already been embarked upon for weeks, months, years, decades, it puts end-stage heroics in a new perspective. Which leads me to point two: it helps to understand how we die in twenty first century technological societies.
To Paul's and M's Friend, part 2
Medicine is good in many ways, extending lives, postponing demises. But we will have demises, so what will they look like? If we know in advance the general trajectory, we can map our placement on it. Thus oriented, we may better accept a demise’s acute onset. The well-known palliative nurse Joann Lynn showed a Denver audience 3 slides. They displayed the 3 most common dying trajectories: • cardiac disease: generally flat with occasion sharp dips (heart attacks), near full recoveries with high vitality, then sudden death
• cancer: generally flat for most years with a relatively sudden dropoff and death • cognitive disease: generally a long angled slope downwards.
Understanding where one is or has been (and for how long) on these curves helps put dying in context.
Next, the distinction between various ways to describe end-of-life choice and terminality. Medicine defines “terminal” as 1–2 MDs diagnosing someone as having 6 months maximum to live (and I believe that medical data shows that they are usually wrong, overly-optimistic by 100%—that is, by the time of diagnosis most folks live 3 months, and of course for readers I’ll add that our mileage may vary).
For those who are terminal, suicide is an erroneous term, because by definition suicide is about the taking of a viable life. “Suicide” is moot when a person is terminal. Organizations like Compassion & Choices in America like “physician assisted dying,” which is useful in that it ties in to the medical establishment for political purposes, far as I can tell. I prefer Tom Preston, MD’s phrase: patient directed dying. (Note: I leave euthanasia out of this letter since its connotations differ from patient directed dying).
A subset of this last point is end of life “standard of care” (a phrase I dislike on several levels). Standard of care is a clinical term. Dying is a personal experience that, in my assessment, ought to be framed primarily in personal terms. *We* the citizens, when dying, get to define our own standard of care. Dying is our experience and if we, like your friend, intend to own it, well, it’s our birthright to own our own dying. The clinic offers standards of treatment against pathology, and a 6 month terminal diagnosis emanates from that framework. We can, and ought to, redefine end-of-life’s standard of care. There may be several definitions depending upon various approaches to heroic action’s timing and duration.
I think that the people you anticipate having to talk to may not understand this, and that’s to be expected. It’s taken me years of parsing my patient-family experiences, tons of reading, lots of reflection, and hundreds of thousands of keystrokes to put these thoughts in order.
The bottom line, the simple truth, is this: that in order to achieve a peaceful death we actually have to *do* something (and well in advance of death’s onset). If we do then, in a sense, we will experience a luxurious demise (it sounds like an oxymoron, and perhaps I’m overly philosophical to use the phrase). Your friend embraces both his vitality and his demise. He rejects what I term “off-the-shelf dying.” He also embodies the oft-cited (and less often realized) American trait: independence. Through his bravery he sets an astonishing example for all of us. To me, the notion of sanctity (derived from the divine in the colloquial sense) means that we honor those who face terminality. You may be familiar with the ethical/medical conundrum called the benefit/burden ratio, which asks us to consider how the potential benefits of treatment weigh against the potential or prospective burdens of it. From the scant info Paul has provided it would appear that M has done weighed his benefit/burden ratio with forethought. M is doing what he must: acting while he’s able to both physically and cognitively. He’s taken charge of his own demise. What a commendable man.
I hope these thoughts may help you parse M’s demise and your role in it, however tangental or perceived by others.
To Paul’s and M’s Friend, part 3
Upon awakening this morning a new metaphor occurred to me that feels tremendously powerful. I’m sure it floated into my consciousness as part of our global tsunami awareness since the Japanese earthquake and inundation.
A brief diversion about metaphor: I have found through my experience of my Dad’s demise that metaphor can obfuscate when we need to talk straight, as during terminality. However, metaphor can clarify when we need to think straight. And of course, talking about dying is not dying, it is living (and to the fullest if we allow ourselves to). I intrinsically make meaning of life through metaphor, so I’m a willing and ripe candidate for metaphors to find me. So here it is:
Imagine Niagara Falls. We know its power. Imagine Niagara Falls as a metaphor for dying. The moment of death, for metaphorical purposes, occurs when we slip over the top (never mind the notion of going over in a barrel and living another day). Now imagine standing in the river 100 yards upstream. I don’t know what the real river’s depth is, but for our purposes the river is neck deep, no matter your height. Imagine the effort it takes to stay in place, with the unrelenting pressure of millions of gallons of water pressing against and past you. This, of course, is what M has engaged in for his period of heroicism (years, I presume).
Now imagine that we’re not just standing any which way, we’re actually facing upstream. Against the flow. (Here I must digress. Even flat water is not really, wavelets are regular, and can swamp you. I know this from windsurfing Laguna Madre at South Padre Island, Texas, where the water ranges from chest to neck deep and when we tire we can hop (or fall!) off our boards and stand there. The wind ranges to 40mph.) It’s hard to keep from ingesting water when facing its elemental flow. So let’s liken M’s heroic action as standing mid-river and *facing* the flow of water (and wind). He’s engaged in pathology treatment and tired of it. He wants to turn around and slip over the falls at a time and in a manner of his choosing.
Standing neck deep facing the flow’s forces equates to engaging in curative treatment against pathology. Medicine’s standard of care at end of life would have us remain there until clinicians decide that we can barely remain, then free us to float into hospice, usually with barely enough time to process that a loved one is about to leave the planet. (Aside: most folks enter hospice for the last few days of life, a period roughly corresponding to final shutdown known as “active dying.” Hospice offers much more than palliation and comfort to the dying, it offers patient-families guidance and assistance in closure. This usually requires more than the last several days to get done in a manner that aids survivors.)
M’s choice is not radical, it’s humane and sane. And his alone to make. He wants to ride the water with awareness, fully human and alive. He does not want to wait until medicine (and politics) decide he’s “terminal.” M’s defining his own end-of-life standard of care.
I hope that this doesn’t come off as a lecture. I don’t know a shorter way to express these thoughts. I believe they require full expression due both to dying’s intrinsic profundity for us and society’s willful blindness and denial around dying.
And with that, I believe that my offer of what I know is exhausted. Godspeed to M and to you,
Bart Windrum
This is my first time visiting this blog; it will be my last. This CEO is supposed to be a revolutionary; I don't see it. Suicide isn't noble. There is no "duty to die" in order to save the government, hospital CEOs, or shareholders money. There's almost nothing more tragic than a human being taking his own life. This nutball has the gall to imply that attempting to intervene in a patient's irrational decision is to "judge" the patient. It sounds like this revolutionary hospital CEO has at least moderate brain damage. There's nothing more tiresome than some hypocrite trying to cram his personal moral or religious values down the throats of everybody else. Sir, if you'd like to see the rancid hypocrite in this debate, take a look in the mirror...
Wow, somebody woke up really cranky. Ordinarily, I would not post a comment with such personally nasty things, but I think there is some value in my regular readers seeing what is out there.
Hmmm, sounds like a Globe commenter.....
Seems like there should be some things that are beyond our feeble human judgement. Life and death decisions are one of them. It is one thing to let life take its course. Another to choose death deliberately. Some things are best left to God.
M's Friend,
If you've returned to this blog post and made it this far, I'd be very interested to know if my replies have been useful to you. Pls email me at Bart@AxiomAction.com.
Now, reply to Mike:
Whenever people invoke God in regards to utilizing medical technology I become bewildered (a statement that I now anticipate some cranky reader will cutely turn against me). Here's my bewilderment: it's apparently natural to utilize medical technology — apparently simply because it exists — yet it's unnatural to stop using it or opt out after some period of use. The former is Godly, the latter heretical.
Boy, is this cherry-picking, or what? Better to use the Eden metaphor, apple-picking.
Part 4
Another very salient aspect of patient-directed dying is what constitutes life support. In my experiences and subsequent musings, two aspects of life support technology arise, so to speak (continuing the metaphor, they each have both a beautiful and a Frankensteinian aspect):
1. when lay people think of life support, we think of arrests and the machinery that may save a life if applied immediately: zapping and chemicals for cardiac failure, and intubation for respiratory failure. Medicine, however, makes three uses of life support technology: as life support technology in response to arrest; as standard operating procedure during surgery, where, essentially, we're half killed and maintained for the duration of the procedure, and — here's where things get slippery — treatment, apparently whenever clinicians deem it so and when we agree. This last use is particularly challenging since the intervention has occurred and our loved one (or ourselves) are already on a clinical course using the technology (which, if I read Mike's comment in the manner in which he intended, is God's intention).
2. what, exactly, constitutes life support? Is it limited to cardiac paddling and intubation? I surmise that life support technology is that which keeps us alive, plain and simple. Dialysis, in M's case. A range of daily prescription drugs in my Dad's case (by the time 19 years elapsed after his first heroic event, a double-bypass, his heart muscle had atrophied to the point that 2/3 was dead and he was functioning (very well, I might add) on the remaining 1/3.
We get to choose how much life support we want, presuming that we have given the matter thought enough in advance. Life support considerations of course tie directly into our understanding and orientation regarding herocism, discussed above).
Part 5
Dying With a Little Fuel Left in Our Tank
Dying in peace is typically represented visually with gentle nature scenes: gentle water (ocean, pond, or mist), or leafy green woodsy settings. One example of the latter is the bucolic vacation cabin. This is an apt metaphor for a peaceful demise. How, exactly and actually — distinct from fancifully — get there?
If we really want our demise to be peaceful (by demise I mean our overall experience of dying spanning weeks to months, not just the final hours), we can’t miss the off-ramp to our metaphorical vacation destination. By default we’re on the highway, in the fast lane: the social/medical default of applying life support technology unendingly to the point that it’s morphed into ongoing treatment and our experience of it is far from peaceful.
Hospice talks about vitality during our end days, and by that they (and I) mean to apply our energies to making the most of a naturally dwindling life free of life support technology (acknowledging that LST may be used for palliative relief during a demise, distinct from ongoing intervention in that process). Do we want to apply our last vital energies toward living as best we can as we fade — which is what we envision, even if we don’t enunciate it, when we say that dying in peace means dying at home — or do we want to apply our last vital energies to actively fighting our deaths for so much time as to strip any real peace from them?
I call this dying with a little fuel left in our tank. The metaphor is apt, albeit not 100% pure: in order to arrive at our bucolic vacation cabin, we can’t run out of fuel (nor can our vehicle fail; it must work well enough to get us there; it can’t break down en route). Now in real life, we never have exactly the right amount of fuel, using the very last drop as we roll up the driveway. By definition we must arrive home with some extra fuel else we won’t make it. I equate fuel to vital energy, to life force. If we wait so long to embark on our final journey that we don’t have enough energy to arrive, we’ll die en route.
Medicine is finding that when we approach dying this way the chances are that we will live longer than our fellows who choose ongoing technological life support treatment. So the choice becomes palatable to more of us. This of course is not M’s case as Paul describes it. But the contours of the landscape, and journey, are consistent. And this circles back to standard of care. Whose standard is it, anyway? Who owns our demise? How do we want to exit this planet and what we experience as our only life on it?
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