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 MUNPA 09 2

The Ambiguity of Death

 Temporal Ambiguity  Emotional Ambiguity  Cultural Ambiguity  Conceptual Ambiguity MUNPA 09 3

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 . . .” MUNPA 09 4

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 MUNPA 09 5

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” MUNPA 09 6

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 . . .

MUNPA 09 7

MUNPA 09 8

Conceptual Ambiguity

 Advancing medical technologies continually stretch the concepts by which we define and attempt to manage medical interventions 

Death

of the body vs person . . .

death

of the 

Heroic/Extraordinary

intervention  Dialysis  Respirator  Nutrition & hydration MUNPA 09

Terri Schiavo

9

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" MUNPA 09 10

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 09 12

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 MUNPA 09 13

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 09 14

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 09 15

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 09 16

Disease Specific Directives

 A type of instructional directive that focuses on issues pertaining to a specific disease  Diabetes, heart disease, lung disease etc.

All of the above types can be combined into one comprehensive directive MUNPA 09 17

Example of a complex directive

CPR VENTILATOR SURGERY BLOOD TRANSFUSION ANTIBIOTICS TUBE FEEDING CURRENT HEALTH WITH POTENTIALLY REVERSIBLE ILLNESS CHRONIC ILLNESS WITH PHYSICAL DISABILITY MILD DEMENTIA MODERATE DEMENTIA SEVERE DEMENTIA MUNPA 09 18

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 09 19

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 09 20

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 09 21

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.

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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] MUNPA 09 23

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 09 24

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 09 25

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 09 26

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 MUNPA 09 27

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. MUNPA 09 28

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 MUNPA 09 29

www.practicalbioethics.org/cpb.aspx?pgID=886 MUNPA 09 30