To be clear: Everyone dies. There are no life-saving medications, only life-prolonging ones. To say that anyone chooses to die is, in most situations, a misstatement of the facts. But medical advances have created at least the facade of choice. It appears as if death has made a counter-offer and that the responsibility is now ours.
In today’s world, an elderly person or their family must “choose,” for example, between dialysis and death, or a feeding tube and death. Those can be very simple choices when you’re 40 and critically ill; they can be agonizing when you’re 80 and the bad days outnumber the good days two to one.
It’s not hard to identify one of these difficult cases in the hospital. Among the patient-care team — nurses, physicians, nursing assistants, physical and occupational therapists, etc. — there is often a palpable sense of “What in the world are we doing to this patient?” That’s “to” and not “for.” We all stagger under the weight of feeling complicit in a patient’s torture, but often it’s the nurses who bear most of that burden, physically and emotionally. As a nurse on a dialysis floor told me, “They’ll tell us things that they won’t tell the family or their physician. They’ll say, ‘I don’t want to have any more dialysis. I’m tired of it,’ but they won’t admit that to anyone else.”
This sense of complicity is what makes taking care of these kinds of patients the toughest thing I do. A fellow physician told me, “I feel like I am participating in something immoral.” Another asked, “Whatever happened to that ‘do no harm’ business?”
This is a wonderfully-written piece. As a physician, I can substitute patients of mine for patients he describes. The flaw in where he wants his lament to lead, however, is in not recognizing something mysterious, God-given and miraculous in all life. The concept people claim of ‘dying with dignity’ is flawed in that it rejects there being dignity in those whose mentation and independence has waned or never was good. Nevertheless, I agree with the concept of letting illness and age invite death in to visit for those ready to go. I can’t tell you how often people are made “full code” because a family member isn’t ready, rather than because the patient wasn’t ready. Interestingly, it is most often the family member who has been estranged for a long time or is least involved in caring for the patient who is not ready.
I lost a mother to heart disease in 1992 and a father to pancreatic cancer in 2000. In both instances, my parents suffered and lingered; my mother, because she could do nothing but sit up in her hospital room and then only for a few days before she died; my father, because he endured the agony caused by this form of cancer (trust me, even hydrocodone does not take away all of the pain). In neither instance was there a moment where we surviving family had to fulfill our parents’ “do not rescusitate” (is that spelled correctly?) directives – no body still functioning with a brain that has flat-lined.
So perhaps I am not fully qualified to comment, but one statement the author wrote has me very concerned:
“If we can be honest and admit that we have no choice about dying, then the only thing we do have a say in are the circumstances. Like many nursing home patients, Dorothy was on the cholesterol-lowering medication Lipitor. Why? So that she wouldn’t die of a heart attack or a stroke. But don’t we all die of something?”
I could envision, in a state where euthanasia is permitted, that an insurance company or family member might make this very same statement, and for cost-saving reasons, decide to withhold medications, surgery, and other treatments. For this reason, and because the author mentioned absolutely nothing about assisting, or finding others to assist the infirm (and their families) to receive God into their hearts (and the comfort that this brings), I find his comments very chilling.
Standing by my father’s bed and hearing the nurse say “he’s going”, my gut instinct was “DO SOMETHING”. Now Dad had Alzheimer’s and had DNR orders in place long in place, but the human instinct remains “DO SOMETHING”.
I’m about to go visit a friend in the last stages of cancer. She also has an order in place for no extra-ordinary measures, but when she came to the hospital Friday, she told the doctor’s to do whatever it takes. The cancer is everywhere, though, so objectively, “whatever it takes” is meaningless. Subjectively, it means she’s not ready to die.
I haven’t the foggiest idea what I am going to say to her.
We cling desperately to this mortal existence until we are ready, and some die before they are ready. God forbid that some should die because of the current glorification of euthanasia or because of cracks in medical insurance. Then there are those who will endure suffering for the sake of family members who aren’t ready to let them go. My father did that for several months because my mother wasn’t ready. When she realized that she was being selfish, she told him, “Kenneth, I love you and I’ll miss you, but I’m ready to let you go.” He died the next day.
Alice, your description rings very true from my experience also. It was shocking to arrive at the nursing home where my father had been only a few days and be told by the head nurse that it was my job to yank my mother out of denial, since none of the professionals there had been able to get through to her.
No one ever did – once all the family were assembled our dad took that as permission to go. We will never understand how much or how long he had been suffering from organ failures but it was clear to me he decided on his own at 83 that the indignity of further dialysis was not on, and he could do no better than leave us. I never understood how he loved us and suffered for us until those final few days, either, when we saw him at the mercy of staff whose main goal appeared to be hastening their charges along a trajectory to the afterlife.
Four years later I still have very mixed feelings about it all since we children had tried hard to get our parents into a long-term care situation which could have had a far less sad finale, but our mother would not hear of it. It seems to me it is, these days, selfish not to participate in planning toward one’s own earthly end if there is any other family member or even a friend who wants to help maintain dignity in that phase of life. There are far too many others who will be part of the process who probably won’t really have your dignity in mind at all.
As I have gotten older and I have begun to have chronic pain and illness, I have pondered “why” God allows me to suffer (sometimes more, sometimes less). I know that the ultimate reasons are for my good and for His glory, yet that is cold comfort in the throws of agony from a kidney stone, or a gout attack, or an arthritis flare-up, etc.
I think that I have begun to understand that God is slowly, carefully, and even gently preparing my spirit to leave this body of death…to trust that He really is caring for my beloved family and doing it far better than I can…that we are (and this is difficult) being made perfect through suffering…that we are being given an opportunity to express our love for Him in a way that He uses to glorify us.
C.S. Lewis spoke of this “glory” as us becoming “famous” with God.
It brings tears to my eyes to think that I might do anything (that He might do anything through me) that could make me “famous” with God; that could receive His approval and for which He would say of me: “Well done, thou good and faithful servant.”.
For I consider that the sufferings of this present time are not worth comparing with the glory that is to be revealed to us. For momentary, light affliction is producing for us an eternal weight of glory far beyond all comparison.
The Weight of Glory indeed!
To Sick & Tired: my husband also has gout (confirmed by a very painful sinovial fluid extraction procedure you’re probably familiar with), diagonosed about 12 years ago. He was on prescription medication for a long time, but had to go off it due to side effects. He was simply terrified (as was I, since based on his symptoms, I am only half-joking when I say that gout explains King Henry VIII marital history), but we did some online research, and started him on tart cherry extract as soon as he went off the allopurinol. It’s been years now, and he’s fine. Apparently the chemicals that make cherries red are very good for the gout and arthritis.
Thank you TACit for sharing your story. And Sick and Tired, I was moved by your lovely words. May God, in HIS infinite mercy, grant you such fame!
Dr. Bowron has given us a masterful description of modern “medicine”. He is right on.
I greatly appreciate his pointing out that this is nor primarily about saving money or making a judgement on who’s life has value and who’s does not.
It is time for Christians to begin to articulate the Biblical case for palliative and comfort care rather than the mindless application of technology to precious bodies of those we love.
The description of the medical hell that dying people often experience and given here is accurate. In my practice I’ve seen it hundreds of times. It is, unfortunately, perhaps the strongest arguement for euthanasia. And believe me, this arguement is being made as we move toward socialized medicine.
The church needs to speak up now about the misuse of medical technology, abortion, infanticide AND the coming euthanasia mandate.
What I’m most impressed with is that Dr. Bowron was able to find another collegue who was similarly concerned about innapropriate medical “care”. One of the reasons I got out of hospital medicine was that I couldn’t find other physicians who shared my concerns. They went right along with the families and even pushed them towards more and more futile care efforts. It disgusted me too much, so now I try to keep patients from going to the hospital.
[i]It is time for Christians to begin to articulate the Biblical case for palliative and comfort care rather than the mindless application of technology to precious bodies of those we love.[/i]
Perhaps we will finally get some clear thinking about opiates, coca and marijuana.
I remember the late Pope John Paul II, appearing at the window at the Vatican, in advanced Parkinson’s, struggling to say a few words and not even succeeding in that, his breath coming in short, rasping gasps. At the time I thought it was ghastly and that he was trying too hard and should have resigned. Only later did I realise that he was offering us an object lesson in dying: putting your suffering into the wounds of Christ on the cross.
We do not know either the day or the hour. We do not know whether we will have time to prepare. And who would be so foolish as to say that he or she would not be scared, or lonely, or distressed? Yet we know that even in turbulence there can be trust in Christ, who stretches out his hand to us.
There’s another side to too much care, which is the urge to rush the elderly off as soon as they’re not “useful” or “dignified.” My father’s (second) wife was strongly opposed to his feeding tube. She was tired of him and wanted him gone. He authorized it himself, fortunately, and this gave him six more months in which time we were able to get his financial matters out of her control, give him back some sense of self-worth and knowledge that he was loved, and repair some relationships with him and with each other. When the end came, we refused dialysis and let him go in accord with his wishes and with common sense. Each case is different, but definitely the controlling criterion should be if the patient is ready to go (and is not just depressed).
In the old days the doctor was in control and patients and family trusted them to make the best solution. Today we have a different culture. Autonomy and distrust for authority and increasing ignorance of health care have put the decision in the lap of the family. With lawyers hovering around, doctors just plow ahead with the maximum treatment. The answer to this is good doctors trainded in geriatrics, good hospice progrems, and palliative care. I have rarely gotten a family to agree with hospice, and doctors have seen so many fraudent hospice programs that they just don’t even consider it. Also, since this is usually in the elderly population which is under Medicare socialized medicine) the pay is cut back so that most don’t even want to learn about it. Churches and ministers need to teach families about this but I don’t know many who have the first clue as to what is going on. So they just spout pious plattitudes. The cange must start with the public, but I don’t see it happening.
Katherine,
In your father’s case he was clearly desiring the tube and it worked out for him and your family. There are times when it is helpful to intervene even in the case of terminal illness.
The majority of the inapropriate care being given is demanded by families over the sometimes-too-passive or demented or incapacitated patient’s wishes.
Euthanasia, abortion and innapropriately futile medical care have one thing in common–a materialistic view of the body as merely a machine to be controlled at the whim of the human will, by means of technology. On the one hand, we kill when it suits us. On the other hand, we refuse to allow a peaceful and timely demise because we believe that God’s leading must be viewed though a technological lens. What I hear frequently is that families don’t want to guilty or powerless.
The freedom of the gospel helps us to resist false guilty or powerless feelings as we submit to God’s gracious intent for our bodies, “…now and at the hour of our death”.
My dear departed grandfather-in-law should have gone to hospice, but instead provided the doctors and hospital with hundreds of thousands of dollars in extra funds as they milked his terminal decline
#15. If it was so clear that your grandfather in law SHOULD have gone to hospice, what did you do to ensure it? Did you suggest to his physicians that he would be better off in hospice? Did you ask your grandfather in law to make a living will and arrange for a durable power of attorney permitting you to yank his feeding tube? Did you arrange for hospice instead of calling 911? Did you call a family meeting to ask that he be made DNR?
Or did you simply take your severely ill grandfather in law to an acute care hospital and then stand around talking about greedly doctors and hospitals “milking” his illness, when his physicians assumed that folks coming to an acute care hospital expected to receive acute care, rather than terminal care?
NEWS FLASH! Physicians and hospitals are required to assume that folks who come to the ER wish to live. They are REQUIRED to save their lives unless there is a DNR order. (And by the way, hospitals are paid by DRG. They lose money on really sick patients. Similarly most physicians who are not heavily procedure based lose money on sick patients. Nobody wishes to have them on their service. The ER docs call around and beg and plead for docs to admit them.
Nobody in medicine gets rich through inappropriate care given terminal patients. However, given litigation, if the family does not agree to DNR or if a single family member says “do everything”, then failure to “do everything” can be construed as not just neglect, and malpractice, but as discrimination against the disabled, and murder.
So Elanor: What did you do to try to get your grandfather to hospice? Let’s hear it. Because most physicans are EXTREMELY willing to send terminal patients to hospice. A simple, “I really think my grandfather should go to hospice, I know he would never want to have chemotherapy”, would do it. Physicians are very happy to receive clear cut instructions such as this. However they are not willing to advocate for hospice when family members are standing there saying “what else can we do to treat my grandfather’s cancer? ”
It’s not the job of the physician to “choose the worthy”. It is our job to make the unworthy, worthy. The presumption is that most folks want to go on living. Bad things have happened to physicians who assumed otherwise, and then got caught in the backlash of family guilt.
This is why until there are “evidence based guidelines” (similar to those in the UK which state that nobody over 65 gets dialysis), the best protection is to have a living will, a durable power of attorney, and to discuss your desires with your family.
My family understands that if I have cancer I wish to be allowed to die. I will not bother with chemo unless the cancer has a greater than 90% cure rate. I also do not wish dialysis unless my renal failure is reasonably easy to reverse. Or a feeding tube. Or respiratory assistance. Or life in a wheelchair. There are a host of other details my family understand, which are written down in my advance directives, that make it clear that no extra resources will ever be wasted on me, if I ever become nonproductive. I am sure my physician (if I ever have one) will be grateful for my forethought. My assets are in living trusts and will bypass probate.
So Elanor. What did you do to prevent the misuse of those “hundreds of thousands of dollars”? Or is the potshots at physicians and hospitals simply to mask the fact that you did nothing?
Clueless,
I definately feel the frustration behind what you are saying. It is true that doctors would love to have clear direction from families about hospice. However, in my experience I’ve had perhaps 2 families sophisticated enough to come to me with that request.
In every other case I’ve had to bring it up with the family. Sometimes I’ve had to push them a bit to consider it. Usually they decline and go for the 2 weeks in the ICU, then death, approach rather than a comfortable demise at home with loved ones.
So, I’d be a bit easier on Elanor. She might not have known that it was an option. We don’t know if she pushed the doctors to “do something” or not. It’s possible that the doctor didn’t listen to her concerns.
I agree that very sick patients cost the hospital money. They DEFINATELY don’t make more money on sick people. They loose money, because as you know the hospital is paid by DRG groups for diagnosis, and the same amount of $ regardless of length of stay. If they don’t cure the patient and discharge them as soon as possible, they loose money. However, the specialists who do procedures on critically ill patients continue to get paid more to do more.
As a doctor it can be too easy to just keep suggesting more procedures if you are such a critical care doctor, especially if you sense that the patient’s family is gunning for you, dysfunctional, angry or lawsuit happy.
The one good thing that will come from more socialized medicine will be such “evidence based” protocols which put a stop to most futile care. Of course, they will also put a stop to the occasional patient that could have benefitted from the technology.
The nice thing about the English system is that no one goes to jail if the patient comes up with the money and asks for the procedure that the National Health Service feels is rarely helpful. In the Canadian “single payer” system, private medicine is outlawed, so presumably the doctor goes to jail or gets fined big time. That’s why the left in this country doesn’t want the English system where people still have choice. They want the Canadian “single payer” system so they can control people and stop them from getting health care that they are willing to pay for or raise funds from insurance/friends, etc.
Cluless, AMEN! You are obviously a fellow warrior, with the scars to show. If you go into a barber shop, you shouldn’t complain if you come out with a haircut! Captain Jack Sparrow is correct that most families don’t know or want to know about palliative care, but since the government and insurance companies consider it not worth reimbersment to have a school for them on it, most of us finally just figure it out and let the family enjoy their autonomy. To bad they don’t recognize their doctor as an expert in all this and trust them to do what is needed. I for one, have just given up on changing the dysfunctional families and legal system. IMHO
I make a point of discussing end of life directives with my terminal patients. These are usually folks with Lou Gerigs disease or unresectable brain tumors. The greater problem is the far larger group of folks who are simply demented and beginning the dwindles. Most folks simply can’t understand the idea that people die and that before they die they will get worse, not better. Thus, if you wish to discuss DNR orders with somebody who has end stage MS, refractory to medications, in a wheelchair, they and their families look at you like you don’t care about them and want them to die.
Today I saw a perfectly healthy 69 year old who had a bit of radicular pain, but whose lumbar disc disease was not severe enough to warrant surgery. I advised her that the pain would probably be reasonably controlled on medications like Gabapentin and a TENS unit. She was angry because she pointed out that she had never been ill before, and that she expected to return to square dancing and what she expected from me was something to “fix” her. She didn’t want to take medications for the rest of her life, she wanted to go on with her life.
In another era, somebody who came to the age of 69 without significant illnesses, who had a bit of back pain that could be well controlled with medications would be counting their blessings. Before WWII most people died before 65. Before the twentieth century, most people died in their 50s. Now they live to be 85 to 95 and are angry that they don’t feel as fit as they were in their 30s.
It is quite difficult to counsel hospice or to discuss end of life issues with somebody who still thinks they will live forever. Older Americans were a good deal more mature 20 years ago then they are now. However the Boomers, unfortunately, are still the same “it’s all about me, and I’m not having enough fun” adolescents that they were 40 years ago. It will be frightening when this overpriviledged, over entitled, Me first group of individuals finally have to face the reality that they have successfully eluded all their lives. And it will not be pretty watching the warfare between the working class and the entitled class play out.