Meanwhile my father drifted into what nurses call “the dwindles”: not sick enough to qualify for hospice care, but sick enough to never get better. He fell repeatedly at night and my mother could not pick him up. Finally, he was weak enough to qualify for palliative care, and a team of nurses and social workers visited the house. His chest grew wheezy. My mother did not request antibiotics. In mid-April 2008, he was taken by ambulance to Middlesex Hospital’s hospice wing, suffering from pneumonia.
Pneumonia was once called “the old man’s friend” for its promise of an easy death. That’s not what I saw when I flew in. On morphine, unreachable, his eyes shut, my beloved father was breathing as hard and regularly as a machine.
My mother sat holding his hand, weeping and begging for forgiveness for her impatience. She sat by him in agony. She beseeched his doctors and nurses to increase his morphine dose and to turn off the pacemaker. It was a weekend, and the doctor on call at Rogan’s cardiology practice refused authorization, saying that my father “might die immediately.” And so came five days of hard labor. My mother and I stayed by him in shifts, while his breathing became increasingly ragged and his feet slowly started to turn blue. I began drafting an appeal to the hospital ethics committee. My brothers flew in.
On a Tuesday afternoon, with my mother at his side, my father stopped breathing. A hospice nurse hung a blue light on the outside of his hospital door. Inside his chest, his pacemaker was still quietly pulsing.
After his memorial service in the Wesleyan University chapel, I carried a box from the crematory into the woods of an old convent where he and I often walked. It was late April, overcast and cold. By the side of a stream, I opened the box, scooped out a handful of ashes and threw them into the swirling water. There were some curious spiraled metal wires, perhaps the leads of his pacemaker, mixed with the white dust and pieces of bone….
Others perhaps are better equipped to comment on the medical aspects. Reading it, my overwhelming emotion was one of sorrow for what this family endured and thankfulness that my 84-year-old father and 74-year-old mother remain in such good health. Physical suffering is bad; dementia even worse. And the agony of praying for the merciful death of one you love . . .
Beautiful piece. But unfortunately, one little three sentence section — the one articulating her political agenda — was false:
[blockquote] But Middletown is part of the fee-for-service medical economy. Doctors peddle their wares on a piecework basis; communication among them is haphazard; thinking is often short term; nobody makes money when medical interventions are declined; and nobody is in charge except the marketplace.[/blockquote]
No — the marketplace is not at all in charge. As the author made clear, the State is in charge of the healthcare industry and most obviously, of the healthcare of the aged.
The writer seems to imply that the pacemaker’s effectiveness was getting in the way of other family member’s lives. However, that is not nececcesarily so, as he was clearly capable of dying even while the pacer was working. It’s ethicially wrong to withdraw treatment “so that a person will die sooner”. However, it is ethicially permissible to withdraw or refuse treatment because it is medically futile and will not prolong life, reduce pain or improve quality of life.
Although the writer is not so clear, it seems to me that turning the pacer off was, in her mind, a request for assisted suicide and I have a big problem with that. I would not have had a problem with refusing to put in the pacer. I also deny that they had no choice. The patient can always say no to procedures. I acknowledge that they were perhaps pressured into expensive procedures that were of limited ultimate benefit.
I think Sarah has also identified the political agenda in the article, who seeks to trash the not-so-free market of medicine while hinting that maybe the profit motive is the cause for all the problems. The writer hints that maybe lower salaries would reduce doctor’s aggressiveness in pushing procedures, and I’m sure she is right. We would have “do nothing” docs and then she would be writing articles about how she could not get her doctors to do what she wanted them to.
The real problem and distortion in the health care field is the profit motive mixed with the third party payer system (Medicare, insurance, etc). Doctors push procedures onto mostly willing patients because someone else is paying the exhorbitant bill. The current administration wants to pay even more of those exhorbitant bills, which is why costs will explode further under Obamacare.
As a follow up to my last post, if he really wanted to die, there are many ways of making that happen. I note her copy of the Hemlock Society book, as a handy resource. So, I’m not sure that this person really had a problem with the medical profession-it seems she had a problem with something, perhaps Someone, else.
Sarah,
I went back to see if I had missed something, but the writer only references Medicare not the “heartless insurance companies who are only concerned with a quick profit.” 🙂
I took the term “marketplace” to refer to the web of economic relationships that Medicare’s guidelines apparently sustain. Obviously, it isn’t a “free” market, but can’t you have a “closed” market? And, obviously, Medicare sets a standard that others follow, both because of the former’s economic clout and because its easier to follow the herd than paddle your own canoe.
On the other hand, I often have long conversations with families whose loved relatives have just sustained a major stroke etc., and while I explain about likely quality of life and the limits of technology and why I personally would not wish a pacemaker, over 95% begin by insisting that “everything be done” and even after several hours of discussion, some 40% insist that everything be done.
However, it is likely that the new Health care reform will have mandatory guidelines for many procedures, including pacemakers, which will make it impossible for even healthy 65 year olds to get them.
Choose your poison.
Clueless, I’ve had similar experiences with my patients expecting extraordinary interventions, mostly because someone else is paying the bill. It’s one of the reasons I stopped doing hospital medicine because I felt that we were starting to do so much that it was unethical.
I agree that eventually Obamacare will have to be heavily rationed, in order to save enough money to pay the salaries of all the hacks that will be hired to run the new healthcare machine. We will all get less healthcare, and overall it will cost more, but hey, at least the Obama supporters will have have what they so desired.
Unfortunately, though, before we get harsh rationing we will have a free-for-all orgy of spending which could, outside of cap and tax, foreign wars, etc, alone bring the currency to ruin. I don’t think Obama and Co, or any successive administration, will be able politically to ration effectively until we have full economic collapse from overspending. Heck, they can’t even properly ration Medicare now due to political pressure from the likes of the AARP and Pharma. Imagine the impossibility of rationing 2/3 of the American population (that’s my estimate of who will ultimately be under Obamacare. The rest will loose their coverage at work and choose to pay the fine and go self-pay, I think).
I also agree that what the writer is calling for is assisted suicide. The pacemaker could have been turned of earlier before the patient was in extremis. She had a copy of Hemlock Society if she wanted him bumped off early without coercing a physician to join her in her impatience.
This is a man who is comatose, but who is “breathing hard”. Folks, that is the way people die. Okay? They are not in pain. He is comatose. He is on morphine. He is unconscious and he feels no pain. Breathing heavily is the way folks die. (Also gurgling and turning blue). When you are gurgling but UNCONCIOUS, it is different from gurgling and being consious and drowning. OKAY?
As I was once told as a college student (when I asked how one was supposed to do CPR if the patient vomited, and you were supposed to put your mouth on the area of mostly cleared vomit), “Dying people are not esthetically pleasing. You do what you have to do and quit whining”.
The problem is that it is hard for patients to watch death, and nobody is used to it in this generation. It used to be that grandma died in her bed with neighbors coming in with casserole and a family member sitting by. People understood death. They took their turn sitting with great grandma at age 8, and then with grandma when they were 20, and by the time they were 40 it was not a shock.
Now death, disease, disabilty and mortality in general has been hidden in hospitals and hospices and nursing homes and people watching somebody actually DIE are SHOCKED! because it does NOT look like what is shown on television.
Pneumonia IS the “the old man’s friendâ€. It is a good friend for an adult who understands that all of us die, and that God waits for us on the other side, like a loving father. For those of us who feel that life should be easy and fun, and “lived to the fullest” after which one should die instantly, lest we forget we are not gods, then pneumonia does seem cruel. We need to get over it. We are mortal. We will die. (That’s a good thing).
[i]This is a man who is comatose, but who is “breathing hard”. Folks, that is the way people die. Okay? They are not in pain. He is comatose. He is on morphine. He is unconscious and he feels no pain. Breathing heavily is the way folks die. (Also gurgling and turning blue). When you are gurgling but UNCONCIOUS, it is different from gurgling and being consious and drowning. OKAY?[/i]
Clueless,
Can one always be sure of the degree of consciousness involved? It’s a bit like saying the fetus feels no pain in an abortion, something that we cannot fully verify but seems highly debatable (at best).
Death is to be welcomed, certainly, but the suffering that accompanies it, at least to me, is part of the Fall not part of the Design. That’s not to say that it can’t be an engine of transformation and grace, but it doesn’t make it desirable. Nor does it always make it comprehensible. I don’t necessarily buy the “solutions” proposed in the article (if indeed any were proposed), but I can empathize with the emotions involved. And I think even if the subjects had been believing Christians, those emotions might still have been there. I seem to recall in [i]A Grief Observed[/i] that Lewis recounts a similar pattern of frustration and resentment in the days leading up to Joy’s death.
If need be, one could do an EEG, and ensure that the predominant wavelength is delta.
However, while cases of people who are anesthetised and awake regularly pop up in the lay press, these almost always, in my experience involve folk who received paralytic drugs as part of surgery and therefore their level of consciousness could not be established. Obviously there are no paralytic drugs involved here.
As to the fetus feeling no pain, IIRC brainwaves can be detected in the eighth week after conception (the tenth week of pregnancy). Before this, it is unlikely that there is the capacity to feel pain. Afterwards, all bets are off, and the closer one is to birth, the more likely it is that the fetus does indeed feel pain.
I would cut the writer some slack. Being a geritrician, I confess that I detest being around dying, frail, elderly. It is not fun. We all have prayed that the Lord would take such patients on home and out of the misery. Early in my career as an intern, I was called to the ER to take care of a Highway patrol officer who had been shot in the head on a routine stop that night. When I arrived he lay there in his freshly pressed uniform and was young and handsome. One half of his skull was blown away and parts of brain and blood were on his collar. His eyeball hung out. But he was breathing and gasping. I quickly prayed, “Lord, please don’t make me give him CPR. Please take him home.” He took two more breathes and was then dead. Then I was shown into the room where his young wife and two little boys, all dressed like they were going to Sunday School. She had on a little hat. I wondered if she had pressed his uniform and kissed him good by that night. Had he hugged his boys. The older boy was asking his mother when was daddy coming home? I then told the Lord that I didn’t want to be a doctor anymore. By then several other highway Patrolmen were there and looking stern. I was glad because I knew they would take care of this family when I left. They were a comfort to me. I quietly told the wife what had happened and that he didn’t suffer. I still cry when I think of this. I quickly left it to the Patrolmen and went away to cry. I thanked God for his mercy. It shaped my life. Sometimes it is the family that needs relief. I wonder if she is just “thinking out loud” and not really saying that it should have been done. It has been pointed out that she had the Hemlock book and could have taken him home and to be dispatched. I was asked to take the Palliative boards since I qualified, but I declined since I did not want more death in my practice than what was already present. I admit that I am weak and not spiritual enough. I don’t like pain or discomfort. I am also glad that God has put those decision outside our responsibility. It is just the result of the fall and we are going to have to put up with it till the restoration. Then it will seem trivial once we are in glory.
“We all have prayed that the Lord would take such patients on home and out of the misery”.
God knows that is true. There is a difference between prayer and action.
“I am also glad that God has put those decision outside our responsibility”.
The writer wishes to change that. She hopes in writing that she can guilt/blackmail/coerce us into becoming murderers instead of healers, so that she does not need to feel uncomfortable for 5 days as she sits at the bedside of her father and watches her mother grieve.
I will cut her no slack.
Country Doc, thank you for sharing the incident regarding the patrolman — we need physicians and other health care providers to provide their thoughtful analysis as well as such real life examples. There are certainly many things that we think very important until the moment that we are confronted with such a patient and such a family at such a time.
It may be that the author of the article was just submitting a cry of the heart and of frustration. But such articles affect people who don’t have the deep knowledge of healthcare and of the options.
Regarding the patrolman again — I cried too.
That was a wonderful story, CountryDoc. The father of American Medicine, William Osler, has a famous essay Aequanimitas or imperturbability, which he specifically warns about hardness but states that the physician should be emotionally reserved. The practice of medicine necessarily entails dealing with very sad situation.
Regarding the article and the “assisted suicide” question: I definitely feel that withholding of active interventions is fine. That can include tube feeds, IV fluids, antibiotics or other medicines, CPR, etc. However, I would never actively hasten a patient’s death. This is the genius of Hippocrates and his oath. If you go to a witch doctor in Africa, you can’t really trust him because you don’t know whether he is on your side or an enemy is paying him more. What a lot of people think of physician assisted suicide is simply physician performed murder. There are no shortage of horror stories from the Netherlands about “physician assisted suicide” of babies with congenital anomalies, of elderly with dementia, of people with depression, etc.
I would agree with Clueless. The father’s breathing simply sounds like agonal breathing. It does not indicate the patient is pain. I just saw it with my father-in-law who took a week to pass aw