Palliative sedation of terminal patients
There is a tough subject that has been being debated in American medical circles for well over a decade. That subject is palliative sedation for, “a patient who is suffering from a terminal illness and who is experiencing great pain. . . .” The wording is from a 1997 Supreme Court decision. The American Academy of Hospice and Palliative Medicine has endorsed the practice as has the American Medical Association in 2008. The reason this is a tough subject is that it slops over into the area of euthanasia, according to some. And, I used the words “slops over” deliberately because it is a sloppy subject. You see, this is again one of those subjects in which our medical knowledge is insufficient to fully answer all the questions. This, therefore, immediately gives an opening for those seeking to cause political harm to put an oar in and stir vigorously.
Let me first state that there is no major Christian body, of which I know, that is against palliative care for those suffering and in pain. The problem is that as the pain grows greater and greater, the dosages of the drugs given that have to be given grows greater and greater. And, with a greater dosage comes a greater risk that the patient will die. So, it is one thing for you to take one aspirin when you have a headache, but too many aspirins may cause you to bleed spontaneously and maybe even die (aspirin overdose). Now, that is a silly example, but it gives you an idea of the problem. This greater risk that a patient will die is why you sometimes see patients in pain in the hospital and the nurse telling them that it is not time for their next dosage yet. Because of the risk posed by some anti-pain medication, patients are often kept on the minimal dose necessary to keep them comfortable, even if not completely out of pain. In addition, there is the danger of addiction with some drugs, so they are used sparingly. I will comment that there are many patient advocates who will argue that physicians are too conservative in their pain management and are allowing their patients to suffer unnecessary pain because of the fear of lawsuits and the refusal of insurance companies to reimburse adequately. Now, to this point there is no conflict with the morality of any major Christian group.
Where does the ticklish situation come in? It comes in when two conditions are present: the patient is in great gut-wrenching pain and the patient is terminal. You see, when a patient is in great gut-wrenching pain but NOT terminal, we sometimes knock them out. That is what is called a “medically induced coma.” No major Christian group has a problem with this type of treatment since the purpose is to keep the patient from further damaging himself/herself while the healing process continues. Medically induced partial paralysis is common for people on a ventilator so that they will not gag the tube out, etc. These types of treatments are seen as morally acceptable despite the fact that a rare few never come out of the coma and despite the danger that the drugs used may cause some harm or addiction. Why are they morally acceptable treatments? Because the rate of survival and mental health ratings for patients receiving such treatments is greater than the rate of survival for patients who do not.
But, what happens when a patient is terminal AND in great gut-wrenching pain? Well, if you sedate them strongly, they may go to sleep and may never fully awake before they die. Sometimes the dose required for severe pain is so strong that it puts them somewhat out of it or fully asleep. And, because their systems are shutting down and debilitated, you run the risk that you may shorten their life by a couple of days. And here are where the arguments come in. Ethically, should you dose someone so highly that they may not be able to be “awake” during their final day or so? How “awake” does a patient need to be in order for the family to feel that they have truly communicated with their dying relative, even if that means that their relative is kept in a state of great pain? Please note that no one is saying that any lives should be ended. No one is even trying to shorten any lives. Among physicians and hospice workers themselves there are arguments over these issues. The issue is how does one balance patient comfort in their final days with the desire of family to spend as much quality time as they can with their dying relative. There is no easy answer.
Nevertheless, some anti-euthanasia people have argued that giving high enough doses of pain management drugs that the patient sleeps through most of their final couple of days is itself a form of euthanasia. That is, the argument has slopped over from active killing into even aggressive pain management. One of the strong modern arguments against euthanasia has been the capability of modern medicine to manage pain. However, it appears that some anti-euthanasia people are trying to move the goal posts to argue that even too much pain management is a form of euthanasia. The problem is that they do not and cannot define what is too much pain management. Even physicians and hospice workers themselves are still trying to work out appropriate pain management protocols that balance out patient comfort with family needs. Many argue that a patient’s comfort is of higher importance than family needs; many argue the reverse. Let me repeat NO ONE is arguing for shortening the patient’s life.
I said at the beginning that this uncertainty about pain management had given the opportunity for some to cause political mayhem. Because of the uncertainty, one of the ways to decide how much to sedate, etc., is in consultation with both the patient and the family. This is often accomplished by a multi-disciplinary team that includes the patient’s physician, a pain-management physician-specialist, a social worker, a hospice worker, etc., in consultation with the patient and the family. The process is sloppy because human beings are sloppy. However, the question is, “who pays for this team consultation process?” The proposed healthcare legislation put in regulations that officially defined the panels so that even private insurance companies would be forced to reimburse for those reviews.
Or, at least, that was until the political fighters stepped in. This type of panel was labeled a “death panel” by the anti-healthcare folk. There was a deliberate and forced twisting of the purpose of these panels into an euthanasia mold, something which goes against the very purpose of the panel. Seeking to cause political harm, they stirred up people into thinking that the government was going to OK killing them in their old age. And, that has never been the case. In fact, to this day, no major Christian denomination has condemned the use of palliative sedation for a terminal patient or the use of a consultation panel to help determine the correct course of patient treatment. And the reason they have not is that every time that the subject is investigated, the Christian denomination finds out that they really do want palliative sedation when they are dying and they really do want multiple people, and themselves, and their relatives consulted about their care at the time of the end of their life. For those of you who are still claiming death panels, you might want to re-read the previous statement. No major Christian denomination has condemned the use of palliative sedation for a terminal patient, particularly when it is in consultation with other healthcare workers and with the family.
Someday you will face your end, unless the Lord returns first. Some of you will die from a disease that will be slow and cause you great pain. Someday you may be the one lying there in great pain. I trust that at that time, you will have available to you the palliative drugs necessary for you to finish out your life in comfort, even if sedated. I hope that there will be people (plural) consulting with you and your family so that you may have some time to say goodbye, even if somewhat sedated. I hope that the insurance company will reimburse you and your family for such consultation. If they will not reimburse, then I hope that ethical healthcare workers will do the right thing by you anyway. That is the most moral approach that I can wish for you.
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Posted by Fr. Ernesto Obregon on Monday, December 28, 2009 at 8:24 am
Filed under uncategorized · Tagged with American Orthodoxy, ethics
On the blog itself, another commenter said, "As for death panels, yes, Virginia, there are death panels; but these are the private insurance companies who deny payment for treatment that they consider 'above and beyond usual and customary'."He states well the problem with the "death panel" arguments. One, they assume that right now anyone is free to make any decision they wish. This is totally true now and will be true in the healthcare bill. But, two, they assume that someone is now paying and someone will not be paying then. And, that is totally false. In many cases, there is no one paying now except the consumer at the cost of personal bankruptcy.A huge part of the reason for the healthcare bill is not simply costs that are the highest costs in the world per capita, but also the horror stories coming out of the private insurance area. And, yet, there are no stories coming from the opponents of healthcare reform about the "death panels" run by the insurance companies, the ones that routinely deny reimbursement for needed procedures.Can you still get the treatment? Sure, just pay for it and go bankrupt. Part of the reason for the healthcare bill, and some of the reforms in it, is to prevent insurance companies from inappropriately denying coverage or denying payment. Will this increase our costs? Hmm, the CBO has said no in their report, and I have posted on their report a couple of months ago.
Thanks for letting me voice my opinions, Ernest, and responding!
Yes, I hear you about the insurance companies, and that completely needs fixed. I agree. I'm just not sure that replacing one failed bureaucracy with another is the best way or right way to solve an increasingly perplexing problem. I think the health insurance companies problem can be "fixed" by some less government-intrusive means and without opening new future opportunities for the government to stick its oft greedy fingers into the healthcare cookie jar. I sure don't have all the answers to fixing the problem, but that's why I also think taking incremental (yet large enough to really matter and make a difference) steps and evaluating their effectiveness is also a far better idea than this one-time-only, one-party only incomprehensible monstrous overhaul.
I appreciate all you said here. You said it well. My main problem with the so-called "death panels," though, is that they can lead down a slippery slope for the government to make decisions about palliative care and the reimbursement of such based on other concerns than the best interest of the patient, such as cost effectiveness and the like. I do not trust the government bureaucracy in these areas. I admit I have always been quite cynical of the government, but that cynicism is based on the knowledge not only of man's fallenness but on the long historical track record of the corruption of power.
I’m sure this post was spurred by the NY Times article on the same topic. The thrust of the article, if I read it right, was the point where pallative medicine is used ethically to treat terminal, unbearable pain. To the authors, it seemed that that line has been moving back somewhat towards speeding the onset of death, and that the pallative medicine as now practiced speeds the onset of death and may deprive family of further contact with the patient without their consent.
I think they’re right, and I think it has been going on a long time. Hospice workers, in particular, are pretty good at figuring out which point the patient is going to die. It seems like when that point is reached, the morphine and other strong pain killers are administered, and the patient begins to curl up and the body prepares to shut down. It also seems like the pain killers speed the descent by a chain of events, like diminishing the body’s ability to aspirate, to take in fluids and food of any type. My personal evidence is anecdotal, but the pattern is consistent. I’ve seen it explained to families, and simply carried out without their knowledge as a part of the doctor’s right to practice medicine as he or she sees fit.
What the article also pointed out is the sadness that the family feels when the patient suddenly “goes downhill” without explanation, after being lucid only a day or two before. There is no warning, normally, there is just a phone call to come to the hospital and spend the final moments with the loved one. The article hints that the family usually fails to see the link between the pallative treatment and the sudden descent. Once the treatment has begun to be administered, I’ve seen nurses call the time of death within minutes.
Now, neither of us are opposed to pallative treatment. However, we need to recognize that the initiation of pallative treatment is up to the doctor and/or nurses on staff. They are the ones who have to determine, through changes in vital signs and other subjective facts, when the patient is beginning to feel real pain and is in need of relief. We don’t know when that is, and the family is rarely consulted because their response would be one of emotion rather than science. If your family was approached by the doctor and told that it was simply a matter of time, and that strong pain killers could be administered that would keep you comfortable yet speed the time of death, and that they would no longer be able to speak to you on this earth, would they do it? Maybe. But, my guess is that some folks hold on life is so strong, that they would never consent, and the patient would simply lie there in pain (of what degree is unknown) until the body shut down.
Upshot: This stuff happens daily without family knowledge. It is an acceptable part of medicine, ethically blurry but still acceptable. The questions are: Is it wrong, ethically and/or Biblically? Should notification be a part of this process? How far do we trust doctors and nurses to hold to blurry ethical line and not keep moving that line back?
You make some excellent points. That is why there is such an argument within the medical community. There is little doubt that some hospice workers have probably gone too far. I say “probably” because, as you say, the stories are anecdotal.
But, I have also worked emergency room, as a medical worker, and watched a drowned patient be “revived” and have a heartbeat for about half an hour before they succumbed again. And, I have seen live and quite aware cancer patients be dead within 24 hours without any palliative care as though a switch had been turned off. Thus, a family who is not aware of how quickly a patient can go down may assume that some extra “help” was given when none was. As you pointed out, that is part of the problem. The denial of death in some family members is so strong that they look for others to blame. It is a well documented part of the healing process to go through steps of denial and anger. But, sometimes, those steps do not get taken properly and the family ends up with a permanent suspicion of the physician, etc. In the USA, that suspicion is furthered by trial lawyers and conspiracy theorists.
While the NYT article triggered my thinking, I also did further research, and that is when I realized that the false death panels stories were based on trying to find models of palliative care that would prevent a single physician or a single hospice worker from having the total responsibility and thus being tempted to play god.
Finally, you bring up an excellent point. The denial of death in family members has led to situations, more than once, in which the patient is in severe suffering, but the family refuses heavy doses of painkillers simply based on the fact that they want to have more time to “talk” to the person dying. And, yes, I have seen patients in pain, dying, and begging for painkillers while the family held back. It is not a pretty picture neither is it the picture that some would like to paint about the pain-managed but fully alert patient who is gently saying goodbye to everyone. Sometimes the choice is pain-managed but not alert (maybe even fully asleep) and not pain-managed and awake but able to talk. I have no problems with the patient choosing option 2 (awake and in pain). I have problems when the family forces that option and the patient is begging for pain-killers.
Thank you, Father Ernesto.
I think the key to the moral/ethical (and possibly legal) question may be one of intent. If the intent of sedation is to comfort the patient with morphine, for example, and one of the side effects of morphine is to hasten the inevitable, then we need to understand this and weigh the alternatives. I’ll agree with DaveMC that the patient and family need to be informed and to give informed consent, unless the patient were unable and the family unavailable. I would not consider this euthanasia if the intent were to relieve severe pain. If, however, the intent were a Kevorkian-style maneuver disguised as sedation, that would be another question.
All drugs have side effects. Watch evening network news and count how many pharmaceutical ads they have (ALL of the ads are pharmaceutical ads!). Listen to them rattle off the long list of “possible side effects” including heart attack, depression, thoughts of suicide, internal bleeding, etc etc etc and I wonder why anyone would ever take this stuff for erectile dysfunction or depression or insomnia. That’s easy: because they tell you to every single night on network news. And people seem to be OK with the risk of possible side effects. So why is pain management any different?
As for death panels, yes, Virginia, there are death panels; but these are the private insurance companies who deny payment for treatment that they consider “above and beyond usual and customary”.
But that’s another story.
All drugs have side effects. Watch evening network news and count how many pharmaceutical ads they have (ALL of the ads are pharmaceutical ads!). Listen to them rattle off the long list of “possible side effects” including heart attack, depression, thoughts of suicide, internal bleeding, etc etc etc and I wonder why anyone would ever take this stuff for erectile dysfunction or depression or insomnia.
Erectile dysfunction is easy. Throughout history, aphrodisiacs have been a number-one pharmaceutical, no matter how bizarre, superstitious, or destructive. (Aphrodisicacs are right up there with immortality.) A lot of men will do anything — definition ANYTHING, no matter how twisted or destructive — to get a bigger and longer stiffie than the other guy and screw like bonobos.
As for death panels, yes, Virginia, there are death panels; but these are the private insurance companies who deny payment for treatment that they consider “above and beyond usual and customary”.
Insurance Company Executives, Celebrities, and other Aristocrats excepted, of course.
Oh boy–Having been a critical care nurse and having lost my father in 2007 to a painful disease, I have been on both sides of this situation.
As a critical care nurse, I have seen terminal patients resusitated time after time living out their lives an inch at a time in great pain and stress because a family could not let go. I have also seen patients whose medication for pain even in moderate amounts could have had a deleterious effect on a failing system.
My take for what it is worth–talk to your family and loved ones–make a living will and an advanced directive–address things like medications, tube feedings, resusitation, respirators, etc. Put it all in writing and give a copy to your physician and your family so everyone knows what it is you really want for yourself.
In a critical situation,. talk to the docs and the nurses. In my father’s case, my parents had talked about what it was that they wanted. When he began to fail, there were no questions about resusitation or respirators. Both of them knew exactly what was wanted. All of my brothers and sisters were there and as the nurse in the bunch, I was the “medical translator.’ I made sure that everyone knew exactly what was going on, so no one felt that the very best was not being done and that nothing was done that was outside of the wishes of my father and my mother. My dad slipped away during the night without any pain or distress with my mother at his side.
The whole thing was communication, communication, communication–to the hospital staff, to the physician, to the family and most importantly between my father and my mother about what was their wish.
As far as hospital staff–I have worked a lot of places and with a lot of different people–the majority of health care professionals take their high calling very seriously and attempt to the best of their ability to take the wishes of the family and the patient into account. I have seen nurses go to great lengths to use every comofrt measure at their disposal to make sure that pain did not rule the day but also make sure that the patient was able to spend time with loved ones.
And remember, every decision is revokable if what you worked out ahead of time is not working. (talk to the nurses–they are the experts in day to day care of the dying…..)
Alix
Thanks for weighing in on this important cultural issue with sensitivity and careful consideration. There has been far too much hysteria, misinformation, and outright lying about supposed death panels. The intention often seems to be to conjure images of Nazi death camps with the threat that this will soon be happening to citizens in American hospitals.
I too have worked in health care and witnessed ridiculous situations where terminally ill patients with no hope of recovery were kept alive and in pain because family members would not or could not accept the inevitable. No one wins in this situation. I would also note that it is completely true that patients who are dying can go from being alert and oriented, having what seems to be their best day in months, to dying in a matter of hours or days – with or without palliative pain management. This is simply a reality of the dying process for the human body.
As a result of the years I spent working in health care, I heartily suggest that everyone discuss advance directives with their doctor and with their close loved ones. Formal, written advance directives, along with a designated health care agent, does much to eliminate unnecessary stress and disagreements when end-of-life decisions must be made. Everyone owes this to their family to formally state their health care wishes in advance.
There are times when it is so very frustrating to watch religious people lie and slander while hiding behind their Bibles and to watch commentators, pundits, and politicians lie and slander while hiding behind the first amendment. The common denominator seems to be ideology over reason, accuracy and truth, personal agenda over integrity, character, and moral responsibility.
Thank you for your courage to speak out on this important and timely social issue (along with so many other issues you courageously tackle)!