Advance Care Planning: Q&A for Faith Communities
by Noel Tiano
What is Advance Care Planning?
Advance Care Planning (ACP) is a “process of exploring what matters to you when thinking about end-of-life care, and sharing that information with your loved ones and health care team so treatment and care plans can support your wishes.” It can include “what is meaningful to you, such as people and pets, your values and the ways you would like those caring for you to look after your spiritual and emotional needs. It will also tell your loved ones and medical staff about the treatment and care you want if you are no longer able to tell them yourself.”
An Advance Directive (AD) which is a “consent or refusal to a specific treatment(s) which may or may not be offered in the future when the patient loses capacity to make healthcare decisions,” may form part of an Advance Care Plan.
What is the legal standing of Advance Care Plans and Advance Directives?
The New Zealand Bill of Rights Act guarantees the right of individuals to refuse medical treatment. According to New Zealand’s Code of Health and Disability Services Consumers’ Rights, Advance Directives can be written or oral instructions, specifying a decision to receive or refuse future health care procedures, including life sustaining treatments such as respirators and resuscitation. A valid Advance Directive is legally binding, but only becomes effective in circumstances where a person is unable to make decisions for themselves.
Both ACPs and ADs need the following criteria to be valid:
- Informed consent
- Decision-making capacity
- Applicable to present circumstances
We live in a world where, in spite of our best intentions, complications may arise due to differences in expectations, communication breakdown and unforeseen events. Advance Care Planning conversations can bring patients, families and providers on the same page as regards care at the end of life.
If your Advance Directive indicates a particular preference, will that be followed?
The fact that a person requests a medication or intervention does not necessarily mean that their request will be granted: the procedure may not be medically indicated; there might be a lack of resources available such as an organ for transplantation; the request may be unethical. In real life, people’s choices need to be balanced by considerations of distributive justice and cultural/ community interests.
Can an Advance Care Plan be changed?
A person can change, void, or update their ACP at any time. A periodic review of ACPs as well as wills and EPAs is suggested, especially when experiencing major changes such as the death of a spouse or partner, separation/divorce, migration, etc. What does Catholic teaching say about end of life care?
Catholic teaching recognises that there are limits to the duty to maintain life and restore health:
“When inevitable death is imminent ... it is permitted in conscience to take the decision to refuse forms of treatment that would only secure a precarious and burdensome prolongation of life, so long as the normal care due to the sick person in similar cases is not interrupted.” (US Conference of Catholic Bishops, 2006). The rationale for this teaching is spelt out in the Catechism of the Catholic Church: “Discontinuing medical procedures that are burdensome, dangerous, extraordinary, or disproportionate to the expected outcome can be legitimate; it is the refusal of ‘over-zealous’ treatment. Here one does not will to cause death; one’s inability to impede it is merely accepted.” (# 2278) The modern hospice movement, founded by Dame Cicely Saunders, takes a holistic approach to caring for those with lifelimiting conditions that incorporates a person’s physical, mental, social and spiritual needs.
What does a Māori approach to Advance Care Planning look like?
The Northland DHB developed a Māori ACP model called He Waka Kakarauri as a way to engage Māori in Advance Care Planning. This can be found at their website at www.northlanddhb.org.nz
I’m ready to work on my Advance Care Plan. How do I start?
Please visit: www.myACP.org.nz
Advance Care Plans provide the opportunity for patients and their whānau to engage in caring conversations about their values, beliefs and practices when facing a life-limiting health condition. While some deaths can be sudden, others are drawn out. Hence, it is imperative to give people ample time to talk about their care plans - their hopes, fears, spiritual needs and other preferences. ACPs can cover retirement, residential care options, palliation, comfort measures, complementary therapies such as music and arts, organ donation, funerals, wills, and enduring powers of attorney.
The complexities of end of life care will continue to increase as cultures and societies change. While ACPs are not a cure-all for all the challenges thrown up by the complexities we encounter at the end of life, nevertheless, such conversations are important steps in promoting patients’ rights and responsibilities. ACPs are meant to enhance future health planning by improving care for the dying through shared decision making.
I strongly recommend writing and dating your ACPs and sharing them with your doctor, family and loved ones.
The goal of care is to cure sometimes, to treat often, to comfort always. (Hippocrates)
Noel Tiano (ThD, MSCW) is a community social worker at Mary Potter Hospice in Wellington.