Introduction

Webcast archive: Suffering, revisited

This week, we discuss the connection between pain, suffering, and assisted suicide.

Webcast archive: Suffering, revisited

In this episode of Euthanasia & Disability, Amy Hasbrouck and Christian Debray discuss:

  • The topic of suffering, revisited

Please note that this text is only a script and that our webcast contains additional commentary.

SUFFERING, REVISITED

  • Two years ago, we talked about suffering as the greatest motivation for assisted suicide.  Since it remains at the centre of the debate, we thought it would be good to look again at what suffering is, and what it means.
  • Although physical pain is often given as the main reason for allowing assisted suicide, pain is not always an important factor when people ask to die.  Only 29% of people who asked for assisted suicide in Oregon in 2015 list “pain or the fear of pain” among the reasons they want to die.
  • So far it is impossible to measure pain on an objective scale; all the ways to measure pain involve self-reporting about the intensity and quality of the pain.  What can be measured objectively is the degree to which pain and feelings that go along with it interfere with a person’s ability to function on a day-to-day basis.
  • But even that measure isn’t just about the intensity and quality of pain.  It includes how the person behaves (bold or fearful), how it makes the person feel emotionally (sad or angry), and its impact on quality of life.
  • Many people have watched a loved one die in pain without realizing that this outcome is dictated by the medical system.
    • Doctors have only a few hours of training in pain management in their entire medical education,
    • Many doctors are unaware of the wide range of pain-control methods, and are afraid of using narcotics to ease pain.
    • Illnesses and conditions that can’t be “cured” are a problem for a health care system that is focused on concrete positive results.
    • Finally, only a small percentage of the population has access to effective palliative care.
  • Pain isn’t the only problem that comes with terminal illness and disability, but many can be treated with effective palliative care.  Nausea, bruising, shortness of breath, communication problems, trouble eating, seizures, and other difficulties can be managed to improve the person’s quality of life.
  • When people talk about “suffering” they sometimes mean the grief that comes with any major loss in life, such as the loss of a spouse or child.  With encouragement and support, it’s possible to pass through this grief to feelings of peace and acceptance.
  • As well, dealing with unresolved personal or family issues can bring relief from anxiety and grief.
  • Another kind of “suffering” has to do with becoming disabled.  Most people have very negative views of disability, as dependence, helplessness, and exclusion.  So when they become disabled, they see themselves in that negative light.
  • The person also sees these negative beliefs reflected all around her, from medical staff, family, friends, co-workers, and even in the media.  She will have few realistic role models or positive views of disability unless she can interact with her peers, such as in the disability community.
  • The real experience of disability (learning to do things differently and dealing with barriers and discrimination) becomes confused with the grief over the loss of ability, and negative beliefs about disability (that life isn’t worth living, that it’s a tragedy, that there will never again be any joy or fulfillment in life).
  • Grief, loss, personal issues, mental health problems, family conflict, tasks left undone, the effects of discrimination and low self-esteem can cause depression and demoralization.  These are often called “existential suffering,” and such feelings can lead to suicide attempts and requests for assisted suicide, whether or not the person has a terminal illness or a disability.
  • In Oregon, the reasons people give most often for asking for assisted suicide include: losing the ability to do favorite activities (90%), losing autonomy (92%), and fear of losing their dignity because they need help with personal care (79%).  All of these are based on prejudiced beliefs about disability, and a lack of architectural access and self-directed home-based care.
  • Disability rights activists worry that such disability discrimination-related “suffering” has become widely accepted as good enough to allow assisted suicide.
  • What are some solutions to different kinds of suffering?
  • Pain management is an expanding medical specialty that treats pain and its effects, using a wide range of techniques, from medication to meditation, from acupuncture to nerve-blockers, for chronic and acute pain.  In fact, pain can alsmost always be controlled with effective palliative care.
  • Palliative care is a medical specialty that includes pain and symptom management to improve the physical and mental state, especially at the end of life.  Good palliative care also includes counselling, social work and spiritual support to help the person deal with grief and other issues, family conflict, and the larger questions of life such as “why me?” and “what is the purpose of my life?”
  • Parity in mental health services means society allocates funds for mental health care on an equal basis with physical health care, so that people in emotional or psychological distress can get the support and treatment they need in a timely fashion.
  • Peer Counselling can help people adapt to the onset of disability, offers role models and peer support to learn to do things differently, helps people navigate the social service system, and teaches skills of self-advocacy that are so important when one is disabled.
  • Self-directed personal assistance services, by giving a person control over when and how help with activities of daily living is provided, can relieve a sense of powerlessness.
  • Obviously, it’s impossible to relieve all suffering.  The hope is to identify the social, economic, spiritual and psychological sources of suffering, as well as the physical ones, and address all of these problems, to steer people toward a better quality of life and away from assisted suicide and euthanasia.

THE LETTER WE SENT TO OUR MP
Member of Parliament, House of Commons, Ottawa, Ontario  K1A 0A6

Dear (MP):

I’m writing to urge you to incorporate the vulnerable person standard in any legislation governing medical aid in dying.

In the Carter decision, the Supreme Court expressed deep concern about protecting the lives of “persons who may be vulnerable to inducement to commit suicide in a time of weakness.”  This statement does not set apart a particular group of people.  Rather it signals a set of circumstances that can befall any person, which would render them vulnerable to social, medical, psychological, or economic pressure to request assisted suicide even if that is not the best solution for that person.

The Vulnerable Persons Standard is a series of procedures to identify those problems that lead to an assisted suicide request, and ensure that they are solved, to put the vulnerable person back on an equal footing with others who have more resiliency.  These measures include:

  • Requiring a vulnerability assessment to determine what social, medical or psychological factors may be putting pressure on the person to request assisted suicide/euthanasia.
  • Requiring a detailed analysis of voluntary, informed consent
  • Requiring before-the-fact, independent approval by a judge or administrative tribunal;
  • Ensuring that communication accessibility (neutral and qualified interpreters) will be provided.

A copy of the Vulnerable Persons Standard is attached to this letter.

The Vulnerable Persons Standard is an invaluable analysis for persons with disabilities, who experience higher rates of poverty, isolation and discrimination which can compromise their resilience.  The Standard provides important procedural and substantive safeguards to ensure that Canadians requesting assistance from physicians to end their lives are not vulnerable to inducement and will not jeopardize their lives because they may be subject to coercion and abuse.

I’m hoping you will act to ensure that federal legislation regulating physician-assisted death incorporates these safeguards.

Thank you very much for your consideration.