Week 8: Advance Care Planning and Euthanasia

Question 1

What are the five key desires that people report as important at the end of their life?

Answer 1

• having their symptoms managed
• avoiding prolongation of dying
• achieving a sense of control
• relieving burdens placed on their family
• strengthening relationships

Question 2

Why is there a discrepancy between how many people say that end-of life conversations and written wishes are important and how many people actually do it?

Answer 2

90% –> 27%
82% –> 23%
People don’t like to address it
May be confronting for the person and their family

Question 3

What is an Advance Care Directive?

Answer 3

An advance care directive (sometimes known as a living will) is a clear written statement/document that sets out your directions including your wishes and values that need to be considered before medical treatment decisions are made on your behalf

Question 4

What are examples of decisions made in an ACD?

Answer 4

NFR
Organ donation
Intubation, tracheostomy, laryngectomy, and other function limiting procedures
Enteral feeding

Question 5

What is Advanced Care Planning?

Answer 5

An interactive process of thinking through and communicating, when you have capacity to do so, with family, friends and health professionals about what is important to you about the quality of life you want should an illness or disease in the future render you unable to speak for yourself

Question 6

What are common ways to plan in advance?

Answer 6

Will
Appointing Power of Attornery
Appointing Enduring Power of Attorney
Appointing Enduring Guardian

Question 7

What is a Will?

Answer 7

A legal document that sets out who you want to receive your assets (including jewellery or sentimental items), money and property when you die

Question 8

What is the difference between a Power of Attorney and and Enduring Guardian?

Answer 8

PofA: a legal document appointing a person or trustee organisation of your choice, to manage your financial and legal affairs while you are alive

EG: can make decisions for you in areas such as accommodation, lifestyle, health and services, if you lose the capacity to make your own decisions at some time in the future
It takes effect only if you lose the capacity to make your own major personal decisions

Question 9

What is the difference between a Power of Attorney and an Enduring Power of Attorney?

Answer 9

PofA: short term
EPofA: long term

Question 10

What is the difference between a next-of-kin, Enduring Guardian and Person Responsible?

Answer 10

Next-of-kin not technically recognised by law

EG: a person appointed by a court or guardianship authority (Guardianship board) to make decisions on behalf of an incompetent adult

PR:is a relative or close friend recognised to have the right to consent to treatment on behalf of an incompetent person. The selection of a person responsible follows a priority system (person responsible hierarchy)

Question 11

What is the Person Responsible Hierarchy in NSW?

Answer 11

A legally appointed guardian or enduring guardian
A spouse or de facto spouse (includes same gender relationships)
An unpaid carer (family member, neighbour or friend who is providing support)
A friend or relative who can demonstrate a close and continuing relationship

Question 12

When does substitute decision-making come into effect?

Answer 12

When an individual loses capacity or is mentally or developmentally delayed, and is unable to understand the nature and effects of any proposed treatment

Question 13

What is the responsibility of a substitute decision-maker?

Answer 13

Decisions made must be in the patients best interests by considering what is known about what the person would have wanted

Question 14

Can people who have already lost capacity plan in advance?

Answer 14

No. Treatment decisions and consent must now be obtained from a substitute decision-maker

Question 15

What are the key elements of Advanced Care Planning?

Answer 15

Learn about your health problems – Health Literacy
Talk to your family/ those close to you
Know who will be your medical decision maker (substitute decision maker)
Write down the important stuff so people know your plan
Review your plan on a regular basis: change in prognosis, or rift in family/change in relationships

Question 16

What are the following features required to make an ACD legally binding?

Answer 16

Made while person has legal capacity
Instructions are clear, specific and current
Directive is signed/dated

Question 17

How do patients want health care professionals to communicate about end-of-life issues?

Answer 17

Realism with compassion
Hope: avoid “nothing more can be done”
Lessen uncertainty: acknowledge limits of prognosis, give estimate in range, emphasise trend of how patient is doing
Requires emotional maturity: balance when to respond emotionally and when to respond professionally
Be there with patients
Speak openly and directly about: illness, progression, treatment options, death
Cultural sensitivity, particularly around knowledge of condition

Question 18

What is palliative care?

Answer 18

Comprehensive, interdisciplinary, and total care - focusing primarily on comfort and support of patients and families who face illness of a chronic nature or who are not responsive to curative treatment

Involves delivery of coordinated and continuous services in the home, hospice, hospitals, skilled nursing facilities; and provision of bereavement care

Question 19

What is considered to be a good death?

Answer 19

To know when death is coming, and to understand what can be expected
To be able to retain control of what happens
To be afforded dignity and privacy
To have control over pain relief and other symptom control
To have choice and control over where death occurs (at home or elsewhere)
To have access to information and expertise of whatever kind is necessary
To have access to any spiritual or emotional support required
To have access to hospice care in any location including home, not only in hospital
To be able to issue advance directives that ensure wishes are respected
To have time to say goodbye, and control over other aspects of timing
To be able to leave when it is time to go, and not to have life prolonged pointlessly

Question 20

What are the limitations of obligation to provide treatment?

Answer 20

physiologically futile (offers no/limited benefit)
physically impossible (lack of material resources),
intellectually impossible (lack of knowledge)
rare or unproven (experimental tx),
disproportionate to: a) pt’s physical condition (eg advance life support in case of end-stage metastatic carcinoma), b) pt’s psychological condition (eg distress at having mutilating surgery), or c) pt’s financial condition (poorer nations & hc markets)
Too painful
Degrading
Great hardship in obtaining necessary resources (eg having to travel great distances)

Question 21

What is Chochinov’s Dignity Therapy?

Answer 21

Ultimate goal of Dignity Therapy is to help bolster the dignity of dying patients and address their suffering. This therapeutic intervention invites individuals with life-limiting illnesses to reflect on matters of importance to them
Using the Dignity Therapy protocol and following the respondent’s cues, a trained therapist facilitates the expression of thoughts, feelings and memories that are compiled in a narrative document for the patient to share with a friend or loved one

Question 22

How is spirituality linked to health outcomes?

Answer 22

Associated with better health outcomes:

• Increased energy
• Longer lifespan
• Better coping skills
• Overall quality of life during illness

Protective factor against risky health behaviours and psychological health

Question 23

What are actions by nurses that support the spiritual needs of patients?

Answer 23

Listening- allowing patients to talk about spiritual concerns (active listening the most important)
Assessments and Interventions
responding to religious needs (refer to chaplain or spiritual counsellor)
Reminiscing
supporting patients & families with end of life decisions
supporting patients & families when feeling lost and unbalanced
encouraging exploration of meaning of life
providing space, time and privacy to talk
Playing music, touch
Be aware of your own spirituality & issues