Choosing to live with good care and dignity: A case of severe Amyotrophic Lateral Sclerosis (ALS)

MONTREAL, June 5, 2013 / –

Today, at home and at the bedside of Dr. Frank Humphrey, a press conference emphasized the value of human life.

Mr. Humphrey is a quadriplegic suffering from the ravages of amyotrophic lateral sclerosis (ALS or Lou Gehrig’s disease). He is a sixty-five-year old survivor who lives at home connected to a ventilator.

He recently published a book on the origins of the universe.

During the press conference, two doctors were present. Dr. Paul Saba is his family doctor and Co-President of the Coalition of Physicians for Social Justice. Dr. Ron Olivenstein, Medical Director of the Montreal Chest Hospital, has an in-depth experience with patients who fit the profile of « ideal candidates » for euthanasia, such as those with neurodegenerative diseases including amyotrophic lateral sclerosis and muscular dystrophy.

These doctors discussed the importance of making available appropriate medical resources to ensure patients have an acceptable quality of life for themselves and their family.

According to Dr. Olivenstein, the vast majority of patients express their concern of suffering rather than dying.

They want to live a quality life for as long as possible and only then to die with as little pain as possible. If they are not abandoned and deprived of resources necessary to provide quality life during their final days, few will seek euthanasia.

Dr. Saba said that Dr. Humphrey’s condition demonstrates the intrinsic value of every life. Furthermore, his situation proves that more patients can live their last days in dignity with proper care. Before being connected to the ventilator, Dr. Humphrey clearly expressed his position against euthanasia which he now communicates by simple facial movements. He lives his last days at home surrounded by his family. For him, every human being is of value and should never be terminated intentionally. According to Dr. Humphrey, governments that pass laws will promote them. In the case of euthanasia, there is a serious risk that such a law would be promoted and increase the incidence of early termination of patients suffering chronic illnesses. Dr. Saba underlined the fact that the best guidelines governing euthanasia in the Netherlands, Belgium and the state of Oregon in the U.S. has failed to prevent medical errors on patient selection and consent, in particular, with the psychiatric population.

Daria Humphrey, the wife of Dr. Humphrey, explained that there is a lack of support for patients on respirators. Although she praises and appreciates the expertise and support of the Montreal Chest Hospital, the 17 hours per week of home care is insufficient.

In summary, Dr. Saba states that there is no reason to introduce euthanasia legislation for very sick patients who do not want aggressive medical care and/or who want to die. Currently all patients have the right to refuse treatment, the right to discontinue care, the right to refrain from specific care and the right to palliative care. What is lacking is access to supportive medical and palliative care to allow seriously ill patients to die with dignity and without pain.

Presently, only 20 percent of Quebeckers have access to palliative care. What is required are resources to provide quality life and dignity in the last days for these patients and their families.


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