THE LIVING WILL AND
THE COMA DIRECTIVE

The Two-State Ethic The South African Medical Association Guidelines How to Organise a Living Will The Coma Care Directive My Coma and Remote State Directive

In ComaCARE work we apply the principle of the TWO STATE ETHIC – in that we regard seriously a pre-arranged legal document, but also appreciate that people change their minds and anyone in a coma or vegetative state also has the right to do so.

It is therefore critical that wherever possible a communication system is established between the care givers and the person in a coma to enable the patient to express his or her current viewpoint on their care. As a patient’s health changes, their wishes may change from day to day. This also relieves family members and healthcare representatives from feeling they must make the decisions on behalf of patients or from clashing with their own personal ethics and religious viewpoints. It could help avoid the bitterness of family members disagreeing with the chosen course of action set forth in the Living Will and reduce possible contention with the medical system.

In this document are the guidelines of the South African Medical Association, also of SAVES, the Living Will Society of South Africa and a COMA CARE DIRECTIVE which in conjunction with a Living Will requests that the two state ethic is implemented on behalf of the client.

The principle is that the client knows their own mind – we have to understand and respect their right to decision making. Our challenge as coma workers is to find a way to communicate with them and follow their process.
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THE SOUTH AFRICAN MEDICAL ASSOCIATION GUIDELINES
A "LIVING WILL" is a declaration or an advance directive which will represent a patient's wish to refuse any medical treatment and attention in the form of being kept alive by artificial means when the patient may no longer be able to competently express a view.

Every person may refuse medical treatment even if such refusal will result in death, unless such treatment is sanctioned by law. To be able to make a declaration such as the "Living Will", a person must be over the age of medical consent and "compos mentis".
The declaration will remain valid even if the declarant later on becomes "non compos mentis".

The Living Will is not a will in the testamentary sense of the word. There is in South Africa at present no law regarding the validity of Living Wills. These guidelines have therefore been designed to assist doctors who are confronted with a Living Will. Doctors are, however, to approach issues surrounding Living Wills with considerable consideration and obtain advice from the South African Medical Association if appropriate.

A doctor should offer to treat and to relieve suffering, and should generally act in the best interests of his patients. There shall be no exception to this principle even in the case of incurable disease or malformation. The World Medical Association's declaration on terminal illness should be borne in mind. This declaration recommends that:

"The doctor may relieve suffering of a terminally ill patient by withholding treatment with the consent of the patient or his immediate family if the patient is unable to express his will. Withholding of treatment does not free the doctor from his obligation to assist the dying person and give him the necessary medication to provide relief in the terminal phase of his illness and the doctor shall refrain from employing any extraordinary means which would prove of no benefit for the patient."

All patients have a right to refuse treatment, which right should be respected. This, however, does not imply or justify abandonment of the patient. Doctors should offer medical care in accordance with good medical practice. The medical care should, however, be acceptable to the patient and appropriate to the circumstances. Doctors are encouraged to raise the subject in a sensitive manner with patients who are anxious about the possible administration of unwanted treatment at a later stage.

Patients frequently believe that an advance directive to refuse life-saving or sustaining treatment will be honoured under all circumstances. The reality of medical practice makes this impossible. If an advance directive is specific to a particular set of circumstances, the directive will have no force when these circumstances or ones essentially similar to them do not exist. If an advance directive is so general that it applies to all possible events that could arise, it is usually too vague to give any usable direction to the doctor. In either case doctors will have to rely on their professional judgment to reach a decision.

It is the responsibility of a patient to ensure that the existence of an advance directive is known to his/her family and to those who may be asked to comply with its provisions. It is recommended that individuals who made an advance directive, should consider wearing on their person an indication as to the location of the document. Doctors who are aware of the existence of such an advance directive, should make all reasonable efforts to acquaint themselves with its contents. In cases of emergency, however, necessary treatment should not be delayed in anticipation of a document which is not readily available.

1. It is strongly recommended that patients review their advance directives at regular intervals. It is further recommended that patients rather destroy than amend the existing advance directive.
2. Doctors with a conscientious objection to withhold treatment in any circumstance are not obliged to comply with an advance directive but should advise the patient of their views and offer to step aside, transferring management of the patient's care to another practitioner.
3.Late discovery of an advance directive after life prolonging treatment has been initiated is not sufficient grounds for ignoring it.
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3. HOW TO ORGANISE A LIVING WILL
The Living Will is addressed to the family and physician, and can state:
"If the time comes when I can no longer take part in decisions for my own future, let this declaration stand as my directive. If there is no reasonable prospect of my recovery from physical illness or impairment expected to cause me severe distress or to render me incapable of rational existence, I do not give my consent to be kept alive by artificial means, including any pacemaker, nor do I give my consent to any form of tube-feeding when I am dying; and I request that I receive whatever quantity of drugs and intravenous fluids as may be required to keep me free from pain or distress even if the moment of death is hastened."

Three or more original Living Wills should be signed when of sound mind and after careful consideration, in the presence of two witnesses. It is imperative to share this decision with anyone who may have to implement The Living Will i.e. doctor/s and family and friends who must be told where you keep your Living Will. The importance of this living will is that it states, “When I can no longer take part in decisions for my own future.”

Due to the fact that many care givers have not been taught communication techniques this state is too often presumed to be the case. ComaCARE techniques endeavour to ensure the patient’s will is heard and respected even when the patient is in coma.

It is suggested that these documents be lodged in the following manner:

1. Kept at home in a safe place for easy access in an emergency.
2. Lodged with the doctor, after full discussion of the contents, so that in advance of the possible need, the doctor understands the instructions. Should there be no private doctor, arrangements can be made to have this copy filed in the patients out-patient file at any hospital.
3. Kept for inclusion in the in-patient file should the need for hospital, nursing home or hospice ever arise.

NB: Residents of Retirement Complexes/Old Age Homes should apply for an extra copy of the Living Will for either Management or the Clinic Sister.

WARNING: Living Will wording should NOT be incorporated within the Last Will and Testament, nor should the Living Will itself be attached to that document. The Last Will and Testament can only be acted upon after death, and the patient could be kept alive against specific directives for months or even years, perhaps at great loss to the estate, before anyone is any the wiser.

Medic Alert
Once a member of SAVES - The Living Will Society, the patient or client can wear a Medic Alert disc engraved with the words "Living Will".
S A Organ Donor Foundation:
For those who wish to donate organs, the prior signing of a Living Will facilitates the speedy harvest of such organs. (24 hour Toll Free Number 0800 22 66 11)
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4. THE COMA CARE DIRECTIVE
Thanks for this example to:
Coma Communication & Process Oriented Facilitation
Stan Tomandl, MA, DPW & Ann Jacob, BA Ed
#502--620 View Street, Victoria, BC, Canada V8W 1J6
250-383-5677 annstan@islandnet.com
Copyright 1992 and 2005 by Stan Tomandl

A LIVING WILL FOR THOSE CONCERNED WITH COMMUNICATION AND DECISION MAKING DURING STATES OF CONFUSION, DELIRIUM, STUPOR, COMA, CATATONIA, ADVANCED DEMENTIA, AND OTHER SO CALLED REMOTE STATES OF CONSCIOUSNESS Introduction

The Coma and Remote State Directive (CRSD) is an advance directive, also known as a living will. The intention of this form is to implement your wishes if you are ever in remote states of consciousness. The CRSD helps ensure that you receive verbal and nonverbal support for your awareness of spiritual, physical, emotional, and cognitive experiences; and that you are facilitated in making your own decisions while you are in remote states of consciousness. We advise you to inform your durable power of attorney for healthcare, family, friends, guardians, spiritual advisors, therapists, lawyers, physicians, healthcare facilities, and others about your wishes set forth in your CRSD.

Process oriented coma workers believe that people in coma and other remote states of consciousness have awareness and are capable of: experiencing meaningful inner awakenings that forward growth and wholeness; communicating their wishes; and participating in life and death decision making. Coma workers observe, follow, support, and facilitate people's inner and outer processes by: perceiving and encouraging subtle communication cues; setting up binary (yes/no) communication systems; and closely attending to feedback from people in remote states of consciousness.
Process oriented coma workers value the emotional, intellectual, creative, social, cultural, and spiritual diversity of all people.

Other important decisions regarding your health care
1) a Durable Power of Attorney for Health Care (Healthcare Representative)
2) a Do Not Resuscitate Order (If you so desire.)
3) a Medical Directive that delineates very specifically which medical interventions you want and do not want. (The Harvard Medical Directive is one such form.)

Completing your CRSD form
Complete the form on the following pages. You may cross out or add whatever you want to your form. Use extra pages if necessary. Then initial any deletions or additions, including extra pages, and sign and date your CRSD in front of two witnesses. Have the witnesses initial any deletions, additions, and extra pages and sign and date. In some jurisdictions a notary public’s signature may be required. Also have your Durable Power of Attorney for Healthcare (Healthcare Representative) and alternate read, sign, and date the form to ensure they are informed of and in agreement with your wishes.

Give copies to and discuss your completed form with some or all of the following
I) Your Durable Power of Attorney for Healthcare and alternate.
2) Your doctors
3) Your designated coma workers
4) Relatives, guardians, and friends
5) Your assisted living facility, care home, hospice, or psychiatric facility
6) Acute care facilities when you register for admittance
7) Your lawyer

Ensure that your doctor and your care facilities place copies in their medical files. Ask them to flag copies so that unfamiliar care givers can become quickly aware of your wishes. Revise your CRSD as your circumstances change.
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