Everyone dies: When, how and who decides?

Jean Echlin, the founding Vice President of the Euthanasia Prevention Coalition and a nurse consultant in palliative care and gerontology wrote this article on the Rasouli case that was published today in the Windsor Star.

The Rasouli case concerned the question: Who has the right to decide to withdraw life-sustaining medical treatment. The doctors said that they had the unilateral right to decide to withdraw life-sustaining treatment, while the courts decided that the doctor must obtain consent before withdrawing life-sustaining treatment. The unanimous decision by the Ontario Court of Appeal is being appealed, by the doctors, to the Supreme Court of Canada.

Echlin explains some of the issues related to the Rasouli decision within the complex dimension of modern medicine.

Echlin's article:

Decisions like this are fraught with anxiety, fear, moral and ethical issues and dilemmas. Differences of opinion are rampant. How is persistent vegetative state diagnosed? How is total brain death diagnosed? What criteria are acceptable to patients, families or alternative decision-makers, doctors and nurses?

How are all findings communicated to patients and their significant others? How and who decides to initiate a ventilator and tube feedings? How and who decides to discontinue this life support? Is there a palliative care consultation to discuss end-of-life issues?

Often the "treatment plan" is implemented in emergencies. After a time, the patient im-proves, deteriorates or remains unchanged, calling for change in the treatment plan, often resulting in confusion. When the patient is non-responsive to treatment or is deteriorating, doctors will use clinical data and judgment to decide if continuation of artificial ventilation and feeding is futile.

The family may totally disagree, based on their perception that their loved one is responsive and will improve, given time. Their moral, religious and cultural values have an enormous impact on their decision-making choice to say no to discontinuation of lifesupport. Health care providers must understand that, as a general rule, none of us want to choose death for a loved one.

The impasse in the Hassan Rasouli case is a typical example and has been reported in various Canadian newspapers and media. It was reported that Rasouli entered Sunnybrook Health Sciences Centre in Toronto in October 2010, for removal of a benign brain tumour. After surgery, the 59-yearold retired mechanical engineer developed bacterial meningitis and encephalitis, causing widespread damage to his brain. He was placed on a ventilator, and a feeding tube was inserted.

Later, his doctors described him as being in a "persistent vegetative state" with no hope of recovery, and thus wanted to remove life support. Rasouli's wife and children disagreed, believing he was responding.

His wife, Parichehr Salasel, a doctor in her native Iran, argued that giving up on him would violate his Shia Muslim beliefs, and this led them to seek legal assistance. The Euthanasia Prevention Coalition obtained intervener status on behalf of the patient and family.

On July 8, Alex Schadenberg, executive director and international chair of Euthanasia Prevention Coalition announced: "EPC's interven-tion in the Rasouli case was successful." The three-judge Court of Appeal agreed with the position of EPC that "withdrawing life-sustaining treatment represented a change in the treatment plan. This decision requires a doctor to obtain consent before withdrawing life-sustaining treatment."

Schadenberg considers "the Rasouli decision a huge victory for individual rights and protects the values of Canadians." EPC lawyers argued: "Since life-sustaining medical treatment is part of the patient's treatment plan, discontinuation of life support required the consent of the person or substitute decision maker." Without reading the court document, I understand that, in Rasouli's case, doctors do not have the unilateral right to "pull the plug" even if they believe this treatment is futile.

This raises the question: Who has the right to decide? The issue creates a dilemma for patients, family and the health care team. Doctors are under pressure regarding limited resources; there is no athome support for persons on ventilators; there are individuals in emergency rooms waiting to access critical care beds. In our current economy, health care resources are stretched to their limit. There seems to be no one answer. Most questions remain unanswered.

In Ontario, when a disagreement occurs between doctors and families about discontinuation of treatment that supports life, there is an alternative. The Consent and Capacity Board can adjudicate toward a decision that reflects the "best interests of the patient."

Advanced technology and increased use of intensive care units give us a hint of immortality. This challenges us to find answers to critical life-and-death questions. As a death-denying culture, we fail to consider dying as part of the life cycle. Unfortunately, to most, death represents a failure of acute care.

When the prognosis for recovery is dismal, many approaches can mitigate a potential hassle between medical staff and family.

It is necessary for comprehensive and continual feedback to the patient and all concerned regarding essential medical information and any changes necessary in the treatment plan. Effective and compassionate communication skills are vital to co-operative decision-making.

The how, when and who decides are issues that must be examined as priorities by all Canadians. A major question is: Do we want our end-of-life care in an intensive care setting, hooked up to machines, or is a quiet, dignified program of hospice palliative care a better alternative?

The Euthanasia Prevention Coalition is concerned that if the Supreme Court of Canada hears the Rasouli case, that they may impose a new criteria to end-of-life decision making on all Canadians. The unanimous decision of the Ontario Court of Appeal that upheld that consent is required before life-sustaining treatment can be withdrawn is a good decision and the Supreme Court of Canada should decide to not take up the Rasouli case.