Advance Health Care Directives Daryl Pullman, Ph.D. Faculty of Medicine

Objectives To better understand something of the context in which AHCDs are prepared i.e. some important issues and distinctions with regard to end-of-life care To understand the nature and effective utilization of Advance Health Care Directives To review some salient features of the N&L legislation on AHCDs 2MUNPA 09

The Ambiguity of Death Temporal Ambiguity Emotional Ambiguity Cultural Ambiguity Conceptual Ambiguity 3MUNPA 09

Temporal Ambiguity “Life used to be like a light bulb... We’d burn brightly for a time and then we’d burn out. That was it! Now it’s like we’re on a dimmer switch. It isn’t clear when the light should go out, or who should turn the switch off...” 4MUNPA 09

Death has become a negotiated event Patients are less likely to die from the underlying disease, and more likely to die from withdrawal of intervention 5MUNPA 09

Emotional ambiguity Frustration, Remorse and Guilt The dying process brings with it a wide range of intense emotions for the patient, the family, and for caregivers alike Infamous “daughter-from-away” 6MUNPA 09

Cultural Ambiguity The context of death—from home, to hospital, to home The institutionalization and medicalization of death has contributed to our death denying culture Too early to tell whether quicker and sicker discharges will lead to greater understanding and acceptance... 7MUNPA 09

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Conceptual Ambiguity Advancing medical technologies continually stretch the concepts by which we define and attempt to manage medical interventions Death of the body vs death of the person... Heroic/Extraordinary intervention Dialysis Respirator Nutrition & hydration Terri Schiavo 9MUNPA 09

Concepts... Futility  Are proposed interventions physiologically futile or reasonably certain not to achieve the desired outcome?  "medical futility"; "strict futility"; "objective futility"  "futility of means"  Are proposed interventions futile in terms of the expressed goals of the patient or their surrogates?  "subjective futility“  "futility of ends" 10MUNPA 09

Advance Health Care Directives A means by which competent individuals can express their wishes with regard to health care decisions in the event they are no longer competent to communicate

Types of Advance Directives Instructional Directives Proxy Directives— Substitute decision maker Value Based Directives Disease Based Directives MUNPA 0912

Instructional Directives (Living Wills) Contains a person’s preferences regarding specific medical interventions Usually related to end-of-life care, but not limited to this 13MUNPA 09

The majority of instructional advance directives are used to… Instruct health care professionals to withdraw or withhold medical treatments such as cardiopulmonary resuscitation mechanical ventilation dialysis antibiotics surgery invasive diagnostic procedures or artificial nutrition and hydration MUNPA 0914

Substitute Decision Maker Proxy Directive “Durable Power of Attorney for Personal Care” Designates a person (or persons) who can make medical decisions on the incompetent patient’s behalf MUNPA 0915

Values-based Directive Expresses the person’s attitudes towards various aspects of human life including: Physical and mental functioning Pain Social interaction (e.g. ability to communicate) Spiritual values Other elements of quality of life Medical intervention MUNPA 0916

Disease Specific Directives A type of instructional directive that focuses on issues pertaining to a specific disease Diabetes, heart disease, lung disease etc. MUNPA 0917 All of the above types can be combined into one comprehensive directive

Example of a complex directive CPRVENTILATORSURGERY BLOOD TRANSFUSION ANTIBIOTICS TUBE FEEDING CURRENT HEALTH WITH POTENTIALLY REVERSIBLE ILLNESS CHRONIC ILLNESS WITH PHYSICAL DISABILITY MILD DEMENTIA MODERATE DEMENTIA SEVERE DEMENTIA 18MUNPA 09

ADVANCE HEALTH CARE DIRECTIVES ACT (1995 ) Newfoundland & Labrador passed the Advance Health Care Directives Act in 1995 The Act allows residents to prepare a document setting out instructions or general principles regarding health care treatment The Act permits the naming of a proxy to make decisions on a person's behalf in the event of incapacity MUNPA 0919

Advance Health Care Directives Act Advance health care directive may contain: Instructions or general principles re health care treatment and/or Appointment of substitute decision- maker [s. 2] Formal requirements—The AHCD must be: In writing, Signed by the maker, and Have two independent witnesses [s. 6] MUNPA 0920

So there is an advance directive: What gets done with it? An advance health care directive comes into effect when maker ceases to be competent to make and communicate health care decisions, and lasts for duration of incompetence [s. 4] As long as patient is competent, can revoke/ revise advance health care directive [s. 8] A health care professional who has a copy of an advance health care directive must include it in patient’s medical record [s. 17] MUNPA 0921

When there is no pre-appointed substitute decision maker Determination of decision maker (must be 19 + yrs) (a) the incompetent person's spouse; (b) children; (c) parents; (d) siblings; (e) grandchildren; (f) grandparents; (g) uncles and aunts; (h) nephews or nieces; (i) another relative of the incompetent person; and (j) the incompetent person's health care professional who is responsible for the proposed health care. 22MUNPA 09

What does the substitute decision maker (proxy) do? If joint SDM’s, majority rules [s. 11] SDM must act in accordance with: (a) directions in advance health care directive; (b) the wishes of the patient as expressed to SDM when competent; or (c) what the SDM believes to be the best interests of patient (if (a) and (b) not available) [s. 12] 23MUNPA 09

Emergency exception Substitute Decision Maker’s consent not required if: Health care is necessary to preserve life or health, and... Delay in finding SDM may pose significant risk to patient [s. 9] MUNPA 0924

Consent Requirements The fact that a document such as a living will or advance directive is on a patient's chart does not remove the obligation of physicians or other health care practitioners to obtain proper consent to treatment MUNPA 0925

Arguments in Favour of ADs They extend a person’s autonomy They promote fair treatment of incompetent patients They reduce emotional anguish for patient’s and families Can reduce distress for care-givers May increase communication (patient/physician; patient/family) MUNPA 0926

Arguments against AD May be inappropriate to project the autonomous wishes of healthy, competent persons onto the future situations of unhealthy, incompetent persons People change their minds but may not change their directives Paradoxical problems of generality and specificity 27MUNPA 09

Directive too specific? too vague? If too specific to a particular set of circumstances, then it will have no force when those circumstances (or ones similar) do not exist. On the other hand, if so general that it applies to all possible events that could arise it is usually too vague to give any usable direction to the physician. In either case physicians will have to rely on their professional judgment to reach a decision. 28MUNPA 09

Some concluding thoughts on ADs ADs are not a panacea for the many complex issues that can arise around end-of-life decision making ADs can be a catalyst to get people talking about end-of-life issues They should be viewed and used as the beginning of an on-going conversation (with family members & physicians) not as the end of a discussion 29MUNPA 09

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