Wednesday, 19 December 2012

Liverpool Care Pathway - Uncomfortable Care


By Caroline Crocker, MSc, PhD, and Joseph Kezele, MD

The family stood around in shock and discussed the devastating verdict. Grandpa Herbert was going to die within the week—there was no hope. Without doing a biopsy on the swelling on his neck, Dr. Jones had arbitrarily decided that the cancer Herbert had recovered from several years ago had returned. The recommendation was that Herbert be transferred to “Comfort Care.”

Grandma Muriel looked dazed, “I thought it was just a boil! If I’d known it was so serious, I would have brought him in sooner—before this happened.” Her 70-year-old husband had noticed the swelling, but ignored it. When he lost consciousness while working in the yard, his family rushed him to the ER. Now, would they even have a chance to say good-bye?

Dr. Jones thrust the Comfort Care papers under Muriel’s nose. “Just sign here and we can transfer him to the right floor. It’s the kindest thing to do. At least he won’t suffer.” Muriel signed, tears running down her face. But, only a few minutes after the physician left, papers in hand, Herbert regained consciousness. Muriel rushed to the door and called the doctor back. “Look, he’s awake. Please, treat him and let’s see how he does.”

Dr. Jones frowned. “No, treating him would be cruel—and it might spread the cancer. Besides you’ve signed the orders now. He’ll be transferred up to Comfort Care within the hour.” Herbert, overhearing all this, began to protest–loudly. He was not ready to be written off.

Unfortunately, the system did not agree. Dr. Jones administered drugs to calm Herbert and he was taken to the Comfort Care floor. The family was told, “If you don’t like it, you’ll need to take it up with the Ethics Committee—they meet next week.” The swelling inexorably grew visibly larger every day. Herbert was given morphine, but no food or water, and died before the Ethics Committee could meet.

Could this happen in America where even physician-assisted suicide (and note that suicide is defined as the person’s desire to die) is illegal in 47/50 states and where it is definitely illegal to terminate  life support against the patient’s wishes? Yes, and it did. This is a true story with only the names changed to protect the innocent (and inevitably the guilty). And it is not unique.

Take a recent incident at a California hospital where an elderly patient began to recover from a stroke after he had been relegated to Comfort Care. His family pleaded for him to be given water and food, but the hospital refused. The patient then suffered the additional indignity of not even having the blood from a nosebleed suctioned from his throat and died before the ethics committee met. Although the hospital’s action may have been legal in Oregon, according to the ironically-named “Oregon Death with Dignity Act,”  the family is alleging that it not in California.

Why would a hospital or a physician do this? Perhaps because medicine is sometimes more about money than about mercy. It can be a business and nothing more.  About 30% of medical costs are incurred during the final year of a person’s life, therefore it makes business sense for Medicare, the hospitals, and the insurance companies to curtail the process of dying. One article quotes, “On average, palliative-care programs can save a hospital more than $2,600 per patient per admission for patients discharged and almost $7,000 per patient per admission for patients who die in the hospital, says R. Sean Morrison, director of the National Palliative Care Research Center, New York.” That’s a savings of $1.3 million per year for a 300 bed hospital. No wonder increasing numbers of American hospitals now offer “comfort“ or palliative care.

So, what exactly is comfort, palliative, or end of life care? No matter what it is called, it is when one places a terminal patient in a quiet ward where they are provided with morphine, but little else. No food. No water. No tests. No monitors. No other medicines. Just the presence of family, periodic turning, swabs for dampening the lips, and perhaps restful music. Because comfort care is meant to allow a dying person a peaceful end and not to terminate the person artificially (that is called murder), the physician needs to certify that the patient is expected to live less than a week. Also the patient or his or her surrogate needs to sign the order to show that he or she agrees that there will be no more medical interventions on his or her behalf. Typically, family members are so traumatized by the serious nature of their loved one’s illness that they unquestioningly accept what they are told, especially when it is said with a gentle voice in an understanding manner.

Once a person is on comfort care, it is expected that they will die within six days. And, if they don’t, it is a problem. After all, the insurance companies and Medicare won’t pay for more than that, leaving the hospital to absorb the difference for those patients who can’t pay their own way. This is why it was difficult to convince the hospital administration to admit the young mother mentioned in this article. The physicians are then left in the unenviable position of 1) having to accurately predict how long a person will live, which is impossible, 2) having to please the insurance companies by advising comfort care, which only costs them for 6 days of treatment, instead of hospice, which may cost them for six months or longer, 3) having to please the hospital, which may suffer financial consequences, if their patients survive for too long, and 4) having to behave in an ethical manner. There are anecdotal accounts that a physician making the “wrong” decision about end-of-life care results in penalties imposed by the hospital administration. There is no doubt that end of life issues are difficult—and the situation is made infinitely more difficult by politics and finance.

The fact is that people do die and sometimes the process is unpleasant or painful. Comfort care seems entirely reasonable. Patients are allowed to die in peace without being bothered by unnecessary medical interventions. They are given morphine to minimize pain, but there are problems.

First, this very treatment can also hasten death. After all, morphine suppresses hunger, thirst, and the digestive processes. Since the patients being given morphine while in comfort care do not feel hunger or thirst and are not being supplemented with IV fluids, they quickly dehydrate. Without water, even a healthy person will die within a week. Morphine also suppresses breathing. Many patients in comfort care have grown tolerant of opiates and require significant amounts of morphine. And it is sometimes difficult to know when a large dose becomes a lethal dose. The side effects of morphine make it difficult to draw the line between keeping a person comfortable and helping them to die, the latter of which is illegal in most states.

According to the Hoag Presbyterian Hospital brochure, the staff is there to help you during your loved one’s last hours, when the patient experiences symptoms that they say are “merely the natural progression of the body as it prepares for the final stage of life.” These symptoms may include, among others, a decrease in appetite and thirst, confusion, changes in breathing patterns, and constipation. Note the similarities to the side effects of morphine? If the morphine is needed to control pain, then accepting the side effects is necessary. But, is morphine necessary?

Not always and this is the second issue. According to hospice nurse Nancy Valko, R.N., in her article, “Sedated to Death,” patients are often given morphine, not to deal with intractable pain, but for the convenience of the health care workers. She gives the example of a radiologist with a brain tumor who decided that he wanted to die and stopped all medication, nutrition, and hydration. After nine days without food or water he became agitated, and so was given high levels of morphine—and died. Was this just comfort care or was it euthanasia?

Valko also points out that comfort care or terminal sedation, which is when the patient is given enough drugs to render them unconscious for the remainder of their lives, is not always only reserved for those who are terminal or who wish to die. It is also administered to victims of strokes, who usually are not in pain and may well recover—unless the morphine and dehydration kill them first.  In fact, comfort care is pretty much what is practiced in the Liverpool Care Pathway, through which 130,000 patients, children included, die every year, even those who could recover from their illness.  Of course, in the case of the UK, it saves the government money–and it is under investigation. In the case of the USA, it benefits Medicare and the insurance companies.

But, assuming comfort care is used ethically and legally, is it really comfortable? This is the third issue. Let’s have a look at a description of comfort care by a proponent.  Robert J. Webb, M.D., informs us “in studies with volunteers dying from different diseases, …dehydration and malnourishment were not shown to be painful.” He asserts “the lack of food and water actually promoted comfort…” Anyone else see the problems here?

One wonders how those conducting these studies gathered their data. It is rather difficult to question dying or unconscious or, for that matter, dead persons about how they are feeling. In addition, assuming that these studies were conducted in the standard manner, with controls, how did the scientists quantify the level of pain or discomfort that the two groups of patients (dehydrated and hydrated) were experiencing? And if, as he suggests, the dehydrated patients did better, did he tell the hydrated patients, “tough luck—you were randomized to the wrong group?” Obviously, this claim is violating AITSE bunk detecting principle 5.  The author is making claims about something that cannot be tested, much less tested scientifically. According to a comprehensive review  by Frederick Burge, MD, it is difficult to design good studies on “very sick people,” as can be imagined.

Dr. Webb and others hasten to assure us that comfort care is not murder or euthanasia because the person does not die of dehydration, but rather from their underlying condition. If, as he says, the disease has progressed to the point where the person cannot drink, as does happen in the terminally ill, then this may be perfectly true, although not universally accepted.  And then it is cruel to force liquids or even administer IV fluids, which can cause uncomfortable swelling. If, however, this point is reached artificially by administration of drugs, then things become less clear. And when those calling the shots are employed or supervised by insurance companies and hospitals that stand to gain from a patient’s speedy demise, then bunk detecting principle 7 is also violated.

So, is comfort care bunk? No. If a terminally ill person who is not being administered morphine is no longer able to receive food and drink, then ceasing to administer IV fluids, with their or their caregiver’s permission, is reasonable. And if a terminally ill person is in great pain, then giving morphine would seem reasonable, even if it leads to premature death.

But, the difficulties are due to the fact that it is economically advantageous for patients who are chronically ill, but not yet terminal, to be given large doses of morphine and deprived of hydration. After all, as Sandeep Jauhar, MD, points out, patients often spend about a month of the last year of life in the hospital. According to him, this “wastes precious resources and prolongs suffering.” But, who really knows when it is the last year? And, if it is, how much are those last days, weeks or months worth? And, seriously, whose decision is it? The doctor’s? The hospital’s? The ethics committee’s? The insurance company’s? The patient’s? Obviously, better controls are needed. Comfort care is now a part of the services currently offered by 80% of American hospitals. So, it is important to decide—are you comfortable with it?

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