Mark Miller, C.Ss.R., Ph.D.
In September, 2002, some members of the University of Toronto Joint Bioethics Centre issued a set of ethical guidelines for proper control of pain in terminally ill patients. The public response (in the media) was quite interesting because the media, it seemed to me, focussed on controversial issues. Numerous palliative care physicians who were interviewed across the country concerning these guidelines responded that they were not new, that good care of the dying already practised this kind of care, and that the guidelines were welcome to get the message about proper care of the dying out to the general public as well as the rest of the health care system.
The media may be motivated by controversy, which is what makes the news, but there are genuine controversies or struggles among practitioners of palliative care concerning the right care for the dying. The media exposure simply highlighted some of these controversies.
The first was the claim that many dying Canadians are not getting adequate pain control. Studies have shown that this is true in Canada. And the first people to acknowledge this fact are palliative care staff. The principal problem seems to be that palliative care is not well enough known or understood across the country and, indeed, that many medical practitioners themselves do not turn to palliative services for the assistance needed in the care of their patients. Some patients, or their families, do not want to talk of death or dying. Some physicians do not themselves want to raise the issue, at least until the final end is so obvious that proper preparation and care come too late.
The result, at times, is a deteriorating condition coupled with the unspoken expectation that the patient will get better. Death may then come as a surprise. Or, equally problematic, there is a sudden realization that the patient is dying and now the patient/family questions the honesty of the staff about the patient’s condition. The latter is a particularly tragic breakdown of trust in the medical staff, because, when palliative care is brought into the picture, the patient/family are doubly cautious about what they hear and about the appropriate treatment options. In such cases, unfortunately, the patient often does not receive adequate pain control until the trust relationship is re-established. Or the care period is terribly short compared to what could have been done to assist this patient to live while dying.
Ideally, palliative care should be seen as one option in most critical illnesses. It may not be needed at all if the patient does recover. Even when the family/patient is not prepared to face the reality of dying, proper pain control may be discussed and implemented as part of the care plan appropriate to this patient. Furthermore, the palliative care team will have been notified and put on alert that their services might be needed at a later date. This approach has the advantage of allowing the patient and family time to get used to the reality that no cure will be found and that death will be the outcome. When they are ready-and they have their own process of coming to terms with this reality-then they will have a better chance of preparing for and dealing with the death of a loved one.
If our entire health care system recognized the reality of the dying-and there are problems both for staff as well as patients and their families with denial, the need for hope, the possibility that one more drug or treatment might work-then the dying would get proper care. Palliative care units in hospitals, palliative care rooms in long term care facilities, hospices, and palliative home care staff are available, even if, at times, understaffed or underfunded. These dedicated doctors, nurses, social workers, volunteers, spiritual care guides and counsellors, every one that I have ever met, is always prepared to go the extra mile to ensure that the dying can live to their fullest ability while dying. No one will be abandoned. The control of pain and the management of symptoms will be dealt with professional skills and personal compassion.
No one needs to die in uncontrolled pain and hopelessness in Canada.
The second controversial issue raised by the above mentioned guidelines was the statement to the effect that there should be no upper limit to the amount of opioid analgesics or other pain control medications. Some journalists immediately raised the spectre of possibly overdosing dying patients, effectively euthanising them.
The reality in palliative care is that patients are neither undertreated, causing uncontrolled pain and runaway symptoms, or overtreated, which may cause either ‘torture’ when no cure is possible or euthanasia if too aggressive. Providing proper pain medication for proper pain control is a very careful art. Palliative care physicians, because of their experience, know, first, that there is a large array of good pain control medications available. Different pain medications will work under different circumstances; a doctor’s experience, along with that of nurses and other team members, helps to tailor the right drug to a patient in appropriate and sometimes changing circumstances.
Second, these physicians also recognize that every drug has side effects. Morphine, for example, can cause severe constipation and thus may need to taken in conjunction with laxatives. Or, in the elderly, morphine may cause hallucinations or terrible anxiety. Other drugs, such as methadone, will then be used in accord with what proves best for the individual patient.
Third, palliative care physicians quickly learn what dosage of a particular pain medication is appropriate. Sometimes a doctor needs to experiment to get it right. Once the proper dosage is found, then regular attention is paid to the drug’s ongoing effectiveness at that level. Patients’ bodies will generally adapt to morphine such that more morphine may be necessary to do the same job. Nurses and other caregivers will generally have instructions to give what is called breakthrough medication (like a ‘top up’) if a patient is showing pain before his/her regular dose (usually every 4 hours). Several breakthroughs usually mean that the body’s tolerance is increasing and so more morphine needs to be prescribed at the regular times.
As an example, in the case of my own mother when she was dying from bone cancer, the palliative care team had first provided her with 1.5 milligrams of morphine every four hours. Over the three months of her care, the dosage was gradually increased to 13 milligrams (an 866% increase, if you like statistics!). That amounts to 78 milligrams of morphine per day. Somewhere in my bioethics reading, however, I recall that the staff at the Sloan Kettering Memorial Hospital in New York once had a patient who received 35,000 milligrams of morphine per day-and was still alert, aware and pain free!
I should also add that palliative care also makes use of steady, ongoing infusion of pain medication, when appropriate, using a ‘patch’ on the skin or a ‘pain pump’ which the patient often controls. The variety of pain medications and approaches to controlling pain have advanced enormously in the past 30 years.
In all of my privileged years of assisting with palliative care and talking with staff, I have never heard of any concern about giving too much medication (unless a mistake were made). The task at hand for these caring doctors and nurses is to control pain. As one palliative care physician told me, “Of course, if I wanted to kill a patient, I know how to give an overdose. But it is an overdose.” There has to be a certain trust in the staff (accompanied by proper charting of care and other systems of control) which there is when we realize that their goal is to care for the dying.
There’s a third controversy called ‘terminal sedation,’ but a reflection on that will have to wait for the next column.
Terminal Sedation: Is It Ethical?
In my last column I talked about some of the controversial issues that arise around palliative or hospice care for the dying. The first issue was the reality that many Canadians are dying in pain, precisely because palliative care is not yet well enough known. The second issue arose around the suggested pain control guidelines put out by members of the Joint Bioethics Centre at the University of Toronto which suggested that there should be no upper limit to the amount of pain medication used in the care of the dying-a not-so-controversial idea once the patterns of effectiveness of pain medication are understood properly.
Perhaps the most controversial issue in palliative care, and something that did surface in the media, has been called ‘terminal sedation.’ On the surface, terminal sedation means using drugs to put a dying patient to sleep, or into a coma, with the high probability that death will occur while the patient is sedated. One has to phrase this description very carefully. Terminal sedation does not mean that a coma or a heavy dose of drugs will be used to end the patient’s life. What it refers to is a treatment response to an otherwise unmanageable medical condition.
Examples may provide the best manner of understanding this treatment option. Suppose a particular patient is allergic to a number of common pain medications, such as morphine and its related family of drugs. Alternate pain medication simply proves less than effective in controlling the pain-something that is, by the way, extremely rare. One of the key goals of a palliative care physician is to ensure that the dying are as free of pain possible and assisted in dealing with other debilitating symptoms. However, normal medical care is simply not working. What ought a palliative care physician do?
Or, a more common example surfaces in the care of persons whose lungs are almost completely non-functional. This can happen with end-stage lung cancer or emphysema or a number of other ailments which make breathing extremely difficult. The patient does not dare exert him/herself lest they cannot then breathe. One patient told me that it is akin to drowning-one simply cannot get enough oxygen. Panic often sets in, which makes the whole situation worse, and then drastic measures may need to be taken both to preserve the patient’s life and to get over the ‘breath’ crisis.
Now there are medications and treatments that assist those whose lung capacity is failing. Once in a while, however, the lung capacity is so poor that the dying process begins to look like a terrible agony. I recall one physician, for example, describing a wife/mother with emphysema so bad she could not sit up in bed. Even talking to her family was exhausting. This poor woman, and her entire family, were very frightened and deeply agitated.
The doctor tried everything and nothing more could help. He suggested to the woman and her family that sedation might be the way to avoid the fear and agitation, warning her that she might die with the sedation or, likely, die while sedated. The latter case meant that she would not be alert to her family when the end came.
Much discussion ensued until both the woman and all her family members agreed. She made her farewells to each family member and then, with one last check by the doctor concerning her understanding and agreement, the doctor provided her with the sedation, unsure himself, as he told the family, whether or not their mother would die. Here is an approximation of the doctor’s own words concerning the sedation: “The mother fell into a deep and very peaceful sleep. We gave her the sedation late in the afternoon. I visited several times over the next few hours and she slept quietly. What I noticed, however, was that the family members, who had been so agitated and upset in sympathy with their mother, were themselves slowly relaxing and entering a peaceful state. I told them to call me during the night if she died. There was no call and the next morning I went into the room and the family members were completely at peace, very grateful that their mother was not suffering. They had had a good night of conversation, memories, mutual support and love. That morning their mother died peacefully-almost as if she had been waiting for her family to attain the same peacefulness.”
Medical technology and drugs can often do amazing things; but there are always limits. The commitment to care, it seems to me, provides the ‘miracles.’
So what is the controversy? Well, obviously, terminal sedation could be a good way to put people to sleep for good (which could be euthanasia) or it could be seen as a way of avoiding the dying process. In other words, why wouldn’t a patient who was terrified of dying simply request terminal sedation during which he or she would eventually die?
The problem with this misuse of sedation, I would suggest, is found in the name ‘terminal’ sedation. It sounds like one more tool in the arsenal of medical treatment, to be used like any other tool. That is why, in palliative care circles, you will seldom hear the phrase ‘terminal sedation.’ Rather the need for sedation in those few cases where it is a last, almost desperate measure to control pain or symptoms means that it is now referred to as ‘appropriate sedation.’ One could argue with this, but I would categorically state that sedation is only appropriate in those few cases where symptoms cannot be managed properly. It assures that patient that he or she will not be abandoned to pain, fear, desperation and panic when all the treatment options have run out. It is part of the overall promise of palliative care: To the best of our ability we will not let you die in desperate circumstances.
So why, some may ask, should the person who is terrified of death not be allowed simply to choose this option? I have two answers to that question and I am not sure how satisfactory they would be to those who like Woody Allen might say, “I am not afraid of death; I just don’t want to be there when it happens.”
The first response is to say that palliative care is developing treatment tools that are appropriate to patient care. No palliative care physician will prescribe, for example, a pain medication if the patient is not in pain. Sedation removes a patient from conscious awareness and therefore an active participation in life. It remains a final option because so many other options are available to control physical pain and symptoms, thus allowing the patient to live and to interact with others as far as possible. Appropriate sedation thus does not become simply a matter of patient choice but an option for appropriate circumstances.
So, why wouldn’t ‘terror of death’ be an appropriate circumstance? This deserves a longer answer than I will give, but it is my second and more important answer. Our society and many in our society live in denial of death. Death and dying are looked upon as evils to be avoided as far as possible. This leads, in my opinion, for a demand upon the medical system to help them live their denial, either by euthanasia or by sedating the patient beyond awareness. I think we need to emphasize the role of living while dying, in the face of such attitudes. People argue that they do not want to die in uncontrolled pain or without any dignity. I’ve already made the point that the former will not happen when there is good palliative care. And somebody needs to explain to me how undignifying situations (such as physical weakness, uncontrolled bowels, etc.) makes a human being undignified when he or she is being cared for with the gentlest of love and compassion? If a person does not want to be cared for, that is his or her problem. To change our system of care because somebody wants a quick out is, I believe, dangerous to the extreme for the dying. People who are aware, people who still have the opportunity to live, even while dying can still do many human things, like tell their family that they love them, or bring forgiveness, or smile with a nurse. Many, many beautiful things happen both to patients and to family and loved ones (and to staff!) when a patient is dying. This does take place in the midst of loss and sorrow and grief, but a denial of these things makes neither us nor the dying more human.
That may not be much of an answer to those who say simply, “I want it.” Nonetheless, I will stick to my guns because of all that the dying have taught me, that caring not killing or even the pseudo-killing of sedation is the only appropriate way to respect the dignity of human beings. Appropriate sedation then becomes one method of assisting in the care of the dying.