By Paul Samakow
Last Monday, the Canadian Supreme Court took up the case of Hassan Rasouli, a 60-year old comatose Toronto man whose family and doctors disagree about whether he should be kept alive on life support. The case is now under their consideration. In 2010 he had a bad result following an attempt to remove a brain tumor; he remains alive, unconscious, with severe brain damage, in a persistent vegetative state. His doctors indicate he will never recover any meaningful consciousness. His wife says removing him from life support goes against Hassan’s religious beliefs.
Canada’s Health Care Consent Act will be interpreted. The Court will decide the meaning of “treatment” and whether or not it includes the withdrawal of life-sustaining measures. Canadian analysts offer that the Court will have to comment on the policy debate about end-of-life decisions.
A lawyer for Rasouli’s doctors, Harry Underwood, is asking the Supreme Court to confirm that it is a doctor’s decision as to whether to offer treatment or continue to offer it, based on an incapable patient’s best interests.
The court could rule in favor of the doctors and grant them unilateral power to withdraw life support, or it could conclude that the family must give their consent before doctors can allow the withdrawal of life support.
A middle-ground decision could center on the intervention of impartial arbiters.
Ordinarily in Canada, such a deadlock is resolved by the decision of a provincial Consent and Capacity Board.
Here in the United States, decisions about extending life for the terminally ill are made by family, or, by medical “advance directives” created by the patient before they became terminal. These are legally binding documents in which a person states whether they want to receive artificial life-sustaining procedures, and where they name someone to communicate their wishes in the event incapacity occurs.
We have seen the “sensational” cases that are the underpinnings of this most sensitive debate.
Ms. Karen Ann Quinlan, in 1975, then 21, consumed too much alcohol, and she stopped breathing and lapsed into a coma. She was later diagnosed as being in a persistent vegetative state. Her parents believed there was no chance she would return to consciousness and wanted to end her suffering. The doctors refused and the court battle that followed became the first “right to die” case in U.S. legal history. The Court ruled that the state (New Jersey) did not demonstrate any compelling interest that would compel Karen to “endure the unendurable” and they allowed her to be removed from life support machinery. Remarkably, she survived off of the respirator for almost ten more years.
In 1990, Terri Schiavo, a 26-year old Florida woman, entered into a vegetative state. She did not have a medical directive. In 1998, her husband petitioned the local court for permission to remove Terri removed from a feeding tube. Terri’s parents opposed that action. A seven-year legal battled ensued that involved 14 appeals and a great deal of money spent on legal fees. Ultimately the original decision allowing for the removal from the feeding tube was sustained and Ms. Schiavo died in March, 2005, a few weeks after the tube was removed.
“I should like particularly, to underline how the administration of water and food, even when provided by artificial means, always represents a natural means of preserving life, not a medical act.”
Those are the words of Pope John Paul II, speaking in March 2004 to an international congress held in Rome. The conference was on “Life-Sustaining Treatments and Vegetative State: Scientific Advances and Ethical Dilemmas,” and it was organized by the World Federation of Catholic Medical Associations and the Pontifical Academy for Life. The pope “cut through” all the ethical dilemmas. He acknowledged that a patient in a persistent vegetative state, or PVS, “shows no evident sign of self awareness or of awareness of the environment, and seems unable to interact with others or to react to specific stimuli,” yet he said that they should be kept alive indefinitely. Such patients, he insisted, “retain their human dignity in all its fullness” and “the loving gaze of God the Father continues to fall upon them.” For this reason, he said, it is obligatory to continue to provide them with food and water, even if this can only be done through a tube. The pope added that to withdraw the tube, knowing that it will lead to the death of the patient, is “euthanasia by omission.”
Australia’s leading Catholic bioethicist, Father Norman Ford, initially disagreed with the Pope. At the conference he argued that since PVS patients lacked the instinct to eat or drink and experienced loss of appetite, to give them food and water, far from being required by their dignity as human beings, actually “shows a lack of respect for them.” But that was before the pope spoke. Afterwards, Father Ford told The Tablet, the leading Catholic magazine in the United Kingdom: “I accept the teaching given by the Pope in his speech to congress participants.”
Europe’s current Human Rights Handbook attempts to “protect” the right to life of a person but does not address whether the law of a member state allows turning off life-support machines. The Parliamentary Assembly of the Council of Europe recommends that member States should assure that unless a patient chooses otherwise, a terminally ill or dying person should get adequate pain relief and palliative care, even if as a side-effect this treatment contributes to the shortening of the individual’s life.
The case of “Mr. A” decided by the High Court in England in 2005 resulted in the ordered termination of life support over the objections of family. The English Court ruled that it was in Mr. A’s best interests that he should be allowed a peaceful and dignified death. They ordered hydration and nutrition, but found it was not in Mr. A’s best interests to continue to be subjected to painful and undignified medical processes that did nothing to improve his terminal condition.
In January, 2010, several economists and University of Chicago professors, working with the Milton Friedman Institute For Research in Economics, published a study titled Terminal Care and the Value of Life Near Its End. They support and offer numerous observations and conclude that while money and the cost of terminal care generally does not support continuation of life, other factors involved do apply to these decisions.
The MFI authors state, clearly correctly, that medical care at the end of life involves a very high cost, and often provides only minimal health benefits. Approximately one quarter of spending on medical care occurs in an individual’s last year of life, regardless of whether the care is privately or publicly financed. The authors note that medical resources are wasted on excessive end-of-life treatment that often only minimally prolongs an already frail life. They note that excessive care at the end of life affects the overall distribution of health care spending as it is highly skewed, driving up lifetime average spending many times. The authors say that it is obvious, from an economic standpoint, that extreme end-of-life spending is irrational, with costs for a few months possibly in the millions.
What I like about the MFI study is that the authors talk about other, non-monetary factors.
The MRI authors cite “preservation of hope of living” as one of those factors. The concept of a newly discovered drug or treatment becoming available raises the prospect of such hope, with the breakthrough of HAART for HIV patients being a prime example.
The MRI authors also discuss the “quality” of life and the value of extending a terminally ill patient’s life. The authors say that terminal care is often more rational for frail patients than commonly believed.
I have problems with all of the discussion about what a terminally ill person knows or feels, and what is or is not humane. Those that offer these thoughts are projecting their own opinions, notwithstanding the obvious that pain may well be present. Pain is not a reason not to extend life.
This discussion brings me to my humble opinions.
We do not know what value a terminally ill patient places on this or her own life while in that condition. If a medical directive was created, we know what they thought before. In the absence of such a directive, my belief is that it is absolutely morally wrong to allow others to literally end a life.
Removing life-sustaining machinery is not literally ending a life (Ms. Schiavo lived almost ten years), although more often than not the removal results in death in a short period. I favor the economic model that then lends itself to a discussion about the greater good.
Simply, the cost of maintaining life as discussed by the MFI authors, in my mind, compels the decision here.