Legal Ease: More funding and discussion on palliative care needed

There has been much talk recently about the new law on advance directives for end of life treatment and doctor-assisted suicide. Discussion regarding palliative care is sorely lacking. We often receive requests for donations from foundations trying to help various medical conditions but how many of us have ever been asked to support palliative care?

What is palliative care? It is care that alleviates the pain caused by a medical condition without curing the condition itself. The definition is best given by the World Health Organization (WHO): “Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.”

WHO also tells us what palliative care does:

• provides relief from pain and other distressing symptoms;
• affirms life and regards dying as a normal process;
• intends neither to hasten or postpone death;
• integrates the psychological and spiritual aspects of patient care;
• offers a support system to help patients live as actively as possible until death;
• offers a support system to help the family cope during the patients illness and in their own bereavement;
• uses a team approach to address the needs of patients and their families, including bereavement counselling, if indicated;

• will enhance quality of life and may also positively influence the course of illness;
• is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications.

The province of Quebec in its Act Respecting End-Of-Life Care defines palliative care as: “the total and active care delivered by an interdisciplinary team to patients suffering from a disease with reserved prognosis, in order to relieve their suffering, without delaying or hastening death, maintain the best quality of life possible and provide them and their close relations the support they need.”

Our law has created a right for everyone to obtain palliative care and has imposed an obligation on our health system to provide it. The Act Respecting End-of-Life Care states: “Every institution must offer end-of-life care and ensure that it is provided to the persons requiring it in continuity and complementarity with any other care that is or has been provided to them.

For this purpose, an institution must, among other things, establish measures to promote a multiple-discipline approach by health and social services professionals and the collaboration of the various other resources concerned who (sic) provide services to its users.”

To summarize, palliative care provides overall comfort and care to patients and those close to them in order to relieve their suffering. It does not interfere or concern itself with the process of death. We may receive treatment for an illness and require palliative care at the same time even though we are not at the end of life. Palliative care and treatment for a medical condition are not mutually exclusive and both require adequate funding.

Even though we may receive palliative care during treatment for a medical condition, “going into palliative care” means something else to all of us. It means that there is nothing more that can be done for our medical condition, we are more likely than not nearing the end of our life, and we are to be kept comfortable and out of pain.

We all know that as medical knowledge has advanced people are living longer as a result of which the need to accommodate those who must receive palliative care has increased. We also know that all health services require government financing and that such financing has been insufficient. As a result there is a concern that the lack of palliative care has created and will continue to increase the demand for physician-assisted death. The question then becomes, if palliative care is readily available and appropriately financed, thereby making the approach to the end of life more pleasant and bearable, will that demand be eliminated, or at least be decreased.

I would like to believe the answer is “yes”.

There are two fears associated with “going into palliative care” as opposed to just “receiving palliative care”. Firstly, many believe that “going into palliative care” means that our demise will be hastened by the administration of continuous palliative sedation. In other words we will receive medications to relieve our suffering, which will put us to sleep without interruption until death ensues. This fear is unfounded and any patient, whether or not in palliative care, is protected by the law, which requires that he consent freely in writing to the treatment after being fully informed of its nature and its irreversible effect. There is moreover an obligation for the physician to make sure that the request for palliative sedation is given freely, in particular by ascertaining that it is not being made as a result of external pressure.

Secondly, going into palliative care does not mean a patient will automatically receive medical aid in dying. Even if some of the criteria of eligibility exist, namely, the patient is at the end of life, suffers from a serious and incurable illness and constant and unbearable pain which cannot be relieved, he must request medical aid in dying himself, in a free and informed manner, by means of the form prescribed by the Minister of Health. The form must be dated and signed by the patient.

The law has given us the right to receive palliative care. It has also granted us the possibility, under certain specific circumstances and conditions, to receive palliative sedation and medical aid in dying. The exercise of our right to palliative care does not oblige us to request or consent to those end-of-life treatments we do not wish to undergo.

We can only hope that sufficient financing is available to enable those who need and want to exercise their right to obtain palliative care to do so.

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