<< 1. Executive Summary | 3. What is a 'Living Will?' What is a 'Will to Live?' >>
The woods are lovely, dark and deep.
But I have promises to keep,
And miles to go before I sleep,
And miles to go before I sleep.

~ Robert Frost

2. Introduction

Making personal choices is basic to our sense of identity and well being. This is especially true of decisions about our health, our personal care and our safety. If illness or an accident prevents you from making decisions about things that really matter to you, who will make these decisions for you? How will you make your preferences known? This workbook is designed to help you state your preferences if you are in a critical medical situation and unable to speak for yourself. Most importantly, it can help you declare that living with a disability is still living, and that you want rights to the same quality of medical care as persons without disabilities.


2.1. MLPD Involvement with End-of-Life Issues

The Manitoba League of Persons with Disabilities has a long-standing involvement in dealing with end-of-life issues, particularly when they concern people with disabilities. One example occurred in the fall of 1998 when the League was approached with a request for support by Helene Sawatzky, whose husband, Andrew, was staying at the Riverview Health Centre on a respite basis. A Do Not Resuscitate (DNR) Order had been placed on Mr. Sawatzky’s medical chart without the knowledge or consent of the Sawatzkys. MLPD was a natural ally; individuals involved in that organization were familiar with the all too prominent view healthcare providers hold that death is the only option for persons with disabilities. Other MLPD members had gone to hospitals seeking intervention to restore them to health and been offered medical measures that would only make them “feel comfortable” until death occurred.^[2] The MLPD played a role as intervener in the court case in support of the Sawatzkys. The decision of the Manitoba Court of Appeal was to remove the DNR Order from Mr. Sawatzky’s chart.^[3]

Following the Sawatzky case, the League undertook research exploring legal, policy and societal perspectives of the placement of DNR Orders and their impact on persons with disabilities. This research was presented to the MLPD membership in October, 2000. It was at this meeting that the concept of a “Will to Live” was recommended. A Will to Live document is one way people can specify to healthcare providers the level and type of care they would want in critical medical circumstances.

A Will to Live was suggested as a way of:

	Giving voice to people with disabilities concerning some prevailing assumptions among some healthcare practitioners that it is better to be dead than to live with a disability; and,
	Providing an opportunity for people to express appreciation for the value of their own lives. People can articulate and reinforce their convictions that life, despite some limited capacities, is still worth living!

Some people have worked with lawyers to write a Will to Live, but not all individuals have the resources to develop such a document. It was for this reason that MLPD undertook a second research project funded by the Canadian Centre on Disability studies. This undertaking drafted a “Will to Live” template based on information obtained from focus groups held throughout the province of Manitoba. The Will to Live Template Project: a Discussion among People with Disabilities in Manitoba about the Right to Medical Care is available from the MLPD office.

The law in Manitoba states it is up to the attending physician alone to decide whether or not a person can receive life-sustaining treatment. This ruling involves resuscitative measures, but also includes such basic healthcare as the administering of antibiotics and hydration. Furthermore, a doctor can place a DNR Order on a patient’s chart without informing the patient or the patient’s family/support circle. Consent on the part of the patient is not required in order to withhold or withdraw medical treatment. According to the Manitoba Court of Appeal:

The Court holds it is for the doctor to determine whether or not heroic measures are to be used to maintain the life of a patient in an irreversible condition. Neither consent nor a court order in lieu is required for a medical doctor to issues a non-resuscitation direction… The wishes of the patient’s family or guardians should be taken into account, but neither their consent nor the approval of the courts is required.[4]

This law is currently under review by the Manitoba Law Reform Commission. The MLPD Ethics Committee submitted an extensive brief to the Commission in 2001. This document gives an account of the medical prejudices people with disabilities have experienced, and the additional risks that such persons have faced because of the de-valuing of their lives by healthcare professionals. A presentation by Sherri Walsh and Rhonda Wiebe was also made at the Canadian National Bio-Ethics Conference in Winnipeg (September, 2001) concerning the rights of patients with disabilities. This presentation was received with enthusiasm by members of the medical community, many of whom had grappled with ethical dilemmas concerning this issue that remained unresolved.

The MLPD formed an Ethics Committee in 2002, which undertook to study this issue further. Responses to articles in various media have been articulated by this committee, as well as a submission to the Law Reform Commission. The Ethics Committee encouraged the creation of a third document that would provide a means for people to express their preferences and make a statement regarding the value of their lives in a “hands on” way. Making a Will to Live: a Workbook for You, Your Substitute Decision-maker, and Your Doctor about the Value of Your Life and Your Preferences in Critical Medical Situations has been designed for just such a purpose.


2.2. How this Workbook Works

This workbook is a guide, not a rule book! Suggestions are made to help you create your Will to Live, but do this in whatever way is most useful for you. You do not need to complete the book in its entirety to make a Will to Live. Choose those sections most relevant to you, and design your document according to your own needs.

The workbook is designed to help you say what is most important to you about:

	The life you lead now;
	The effect additional physical/mental restrictions might have on your future; and,
	Actions you would/would not want taken in critical medical situations.

This is not going to produce a legal document for you! The only legally binding part you can have on record is the Advance Health Care Directive found in Section 8. The intention of this workbook is to give you an opportunity to make your preferences known so that you can discuss them with your doctor, the person you choose as your substitute decision-maker if you cannot speak for yourself (this person is sometimes known as a “patient proxy,”) and your support circle, whether that be family or other loved ones. There is no “one-size-fits-all” formula for advance planning such as this, so choose what parts of this book work best for you!

One of the most prominent issues that have arisen in past MLPD research concerns the dilemma doctors and loved ones face when they don’t know what a patient would want to have happen in a critical medical situation, and the patient is unable to communicate. This leaves some very agonizing decisions up to people who haven’t been given direction as to preferences for action taken. Often this ambiguity, coupled with prevailing attitudes among some health care providers, has led to the de-valuing of the lives of people with disabilities. Previous research has documented medical viewpoints that consistently view life as being too pitiable, too difficult, and too expensive when disabilities requiring assistive support are involved.^[5] Discussing how you find fulfillment in your life and how you overcome barriers despite some limitations may be a real eye-opener to the people around you, including your healthcare provider!

These are complicated and serious ideas to contemplate. It is our hope that having questions to get you started will make this task easier.

---

2	For a more detailed examination of this research, see previous MLPD Report by Rhonda Wiebe, Our Last Rights: Do Not Resuscitate (DNR) Orders and People with Disabilities. Winnipeg: MLPD, 2000.
3	A description of the legal proceedings and ramifications can be found in Sherri Walsh's report Do Not Resuscitate Orders and the Law in Canada - Patients' Rights. Winnipeg: MLPD, 2000.
4	As cited in the Dominion Law Reports (1997), 154 DLR (4th) 409.
5	Abramson, N. Quality of Life: Who Can Make the Judgment? Journal of Medical Ethics. January, 2000. Baylis, F. Deciding for Others: The Established Ethical Framework for Treatment Decisions and the Futility Debate. Dalhousie University. 1999. Hershey, L. Attitudes About Disability Prove Almost Lethal. Ourworld.compuserve.com/homepages/LauralHer/ccl110299. Maihot, A. Any Choice You Want As Long As It's Death. The Disability Rag & ReSource. Jan/Feb, 1995. Reiskin, J. Suicide: Political or Personal? The Disability Rag. March/April, 1991. Sobsey, D. Disability, Discrimination and the Law. Health Law Review (1993) 2 Health L. Rev. No. 1, 6-10. Wiebe, R. Our Last Rights: Do Not Resuscitate (DNR) Orders and People with Disabilities. MLPD, 2000.

<< 1. Executive Summary | 3. What is a 'Living Will?' What is a 'Will to Live?' >>


Making A Will To Live - Contents