End of Life

On 22 November 2017, the Victorian Parliament passed a Voluntary Assisted Dying Bill, making it legal for doctor assisted death for terminally ill people from the end of 2019. Background and details on the Bill can be found here

Many moves have been made in State, Territory and Commonwealth parliaments to introduce bills to permit euthanasia, with more than 30 so-called “dying with dignity” bills introduced to state and territory parliaments in Australia over the past 20 years, mostly without success.

The Northern Territory Act on assisted dying, the ‘Rights of the Terminally Ill Act’ was passed on 25 May 1995 but was subsequently overturned by a Federal bill on 25 March 1997. In November 2016, the South Australian Parliament narrowly rejected a private member’s bill which would have legalised a right to request voluntary euthanasia in circumstances where a person is in unbearable pain and suffering from a terminal illness. The bill was the first ever euthanasia bill to pass a second reading stage (27 votes to 19), though the bill was rejected during the clauses debate. The Victorian Government has announced it will table a bill on voluntary assisted dying, and a ministerial advisory panel was formed to consider the key issues. That ministerial advisory panel has developed a series of discussion papers and materials pertaining to the bill, and are in the process of inviting feedback.

In Europe, assisted dying is legal in Switzerland, Belgium, the Netherlands and Luxembourg. There are similar laws in the US states of Oregon, Washington, Montana and Vermont. Currently, in Australia, euthanasia and assisting suicide can result in charges of murder or manslaughter under State and Territory criminal law. Suicide itself is not a crime, but aiding or abetting suicide does remain a crime.

Issues of voluntary assisted dying have implications for all of us and deserve consideration in the light of our faith. Indeed, behind the legislation are questions of personal autonomy and questions of the very nature of life. Resources were developed and provided as part our a BUV wide discussion around end of life issues during 2016/2017. This involved our 2017 Consultation Forums and Delegates Dinners affording opportunities for meaningful, respectful discussions among Victorian Baptists. These were occasions for listening, sharing and seeking to better understand the views of others so that we move forward in effective mission of transforming Victoria and advancing the Kingdom of God together, regardless of our diversity in views.

The Church’s long-held response to that question is the life and death of Jesus Christ. It is the Christian community’s claim that we are made for life – life that neither precludes nor dulls the actuality of death. Death ¬– whether biological, emotional, or relational – may indeed be life’s enemy. But it is an enemy that, like the strange promise of resurrection, is woven into the warp and woof of life in God’s world. Whereas it sometimes may be an enemy from which to flee, at other times death may be the enemy we must embrace as an embodied parable of love’s final hope. Because God is the God of life, then not only are all of life’s experiences of concern to God but also all of life’s experiences are in some sense constitutive features of God’s own experience with and in the world. In every experience, in everything, God is waiting for us. This means that death is not in the final analysis the contradiction of life but that it is somehow mysteriously and inescapably bound up with the movement of life in the world and in God.

Put most simply, Christian faith ‘illuminates death in the light of the gospel. Thus it brings light also into the darkness of death’ (Eberhard Jüngel). Such a claim is made possible because in his own death, the second Person of the Trinity enters into the madness, confusion, fear, manipulation, risk, pain, isolation, and sheer contradiction of the human experience in its totality. Whatever the mode of death, one dies not into nothingness, therefore, but into God, into the life in whom death is not unfamiliar territory, into the first and last reality. In taking on the frailty and dis-ease of fallen human flesh, Christ takes responsibility for the creature’s decision vis-à-vis their own death, regardless of the outcome and regardless of the conditions under which such a decision is made. To welcome this Good News is to confess that we cannot be God to ourselves.

Pastoral leaders most often encounter the questions around the right to die in the furrowed brows and anxiously gripped hands of those for whom they care. The theory and the theology are embodied in the lives of those asking authentic questions about their own lives and what it means to respond to the struggle they are facing in God-honouring ways. Those we care for want to do the right thing, but also know pain well. Their interest is not getting caught up in a political debate, but rather responding faithfully in a way that rings true to their experience of God.

That’s my experience, as a pastor engaged in reflecting with people on the way. The rights and wrongs that sit around whether dignity is an important factor to God, or whether sanctity of life is held beyond any genuine conversation around end-of-life interventions fade as we struggle along with the questions that accompany the relinquishment of control in ageing and infirmity. The theories that enliven debate when we are still energetic don’t hold much power when energy is exhausted just surviving.

It’s not that the debate isn’t important. It needs to be had, for the issues have escalated alongside potential medical interventions. The power to prolong life, to interrupt and intervene in procedures, has heightened the need to work out the ethics. Concepts of human dignity, quality of life, individual rights and divine sanctity of life need to be grappled with, but in the end the doctrinal positions that seek a right answer to the problem somehow don’t hold the power in the face of the pain.

But there is a more fundamental question about our identity, that sense of self that connects with Other and others, that tension of considering the ties between the community and individual
that inform our pastoral response. The debate about end of life choices strikes at the heart of our sense of self, autonomy, individual personhood, as well as our sense of connection with a larger body, a community, our God.

Claiming that dual sense of being known and loved by God and that we belong to a larger body of God, prompts sensitive pastoral care. We respond to the individual person as they are within the body, reminding them that they belong to a larger body, accompanying one another on the way. The questions then are not only about rights or choices but about how we offer loving care along the way, how we express the love of God in the moments of pain, how we embody God in acts of compassion, suspending judgment on individual choices. It is a reminder that we are known and held in God, as Jeremiah reminds us “Before I formed you in the womb I knew you” (Jer 1:5).

I would add, as the media hype polarises the debate, the potential for those who are dying to either consider themselves as burdens or be cast as such, threatens the very concept of dignity. Valuing the life that is there to be lived, has to be supported by a trusted system that recognises the worth of all people, regardless of their circumstances.

Accompanying the living as they die is learned when we accompany one another every day we live toward our own dying. Recognising this may break down the fear of getting it right, and free us to compassionate loving.

Surveys consistently show that 60-70% of Australians would prefer to die at home. Only about 14% of people do, with 54% dying in hospitals and 32% in residential care. Although it’s important to acknowledge that for many residents their aged care facility is their home. At Baptcare, we believe that honouring people’s desire to stay at home for palliative care (often a process of
many years, treating an illness that eventually takes your life) and end of life care (the last weeks and days of a person’s life) is paramount. We are establishing new services that enable this to occur and seeking partnerships that enable periodic support as needed in an aged care facility or hospital with a view to returning home. We are planning to make our aged care facilities able to deliver more of these services so our residents don’t need to be hospitalised.

Our treatment of the elderly, severely disabled and people living with serious chronic disease or terminal illness is very different to the way we manage end of life decisions following traumatic, acute or adverse events. Up to 80% of deaths in hospital Intensive Care Units (ICU) are as a result of withdrawing or withholding treatment. That’s not just ventilation – it’s also fluids, nutrition, oxygen and dialysis. Many of these interventions that are withdrawn in an ICU are things we commence without hesitation in sub-acute hospital wards, residential and community care settings. We have to make more conscious, deliberate decisions because often all we’re doing is extending the dying process rather than giving a further quality of life.

What can we all do?

Two documents are absolutely essential to help prepare for a good death.

Most people have a Will and Power of Attorney. That’s good, but they don’t help at the end of life. A Will doesn’t take effect until after we die. Power of Attorney only allows legal and financial decisions to be made on your behalf.

Who has a written Advanced Care Plan and is confident their loved ones know their wishes?

Have you arranged Enduring Guardianship as well?

Those two documents, an Advanced Care Plan and Enduring Guardianship, are the only two that can help you at the end of life. An Advanced Care Plan documents your wishes but it may be useless unless you’ve also arranged Enduring Guardianship. Enduring Guardianship is the only legal mechanism that allows someone to make decisions about your health care and living arrangements if you’re unable to communicate your wishes yourself. You may have an advanced care plan but unless you give your spouse, close friend or your children the authority to make decisions then your wishes may be disregarded.

A helpful online tool is Michael Hebb’s website, Death over Dinner. It’s worth a look. As the name suggests it helps you plan a dinner party for family or friends to get the conversation started.

There is a growing recognition of the patient as more than a body, rather they are considered in holistic terms, as body, mind and spirit. For the industry’s peak body Spiritual Care Australia (SCA), Spiritual Care encompasses all the ways in which attention is paid to the spiritual dimension of life. Our health care context has some work to do in order to understand and integrate the growing recognition of spiritual needs at end of life in both patients and carers.

Within the Palliative Care context, Pastoral Care has arguably been considered an integral component of the health care process, yet often has been a low priority in this age of funding limitations. My experience as a hospital department head points me to the limitations that are particularly demonstrated in the Victorian Auditor General’s Office report (VAGO) that commented the cost of dying as an inpatient hospital to be ‘significant’. This significance is dependent on Activity Based Funding (ABF) that relies on patient outcomes to demonstrate cost. This prompts the Pastoral Care Worker specifically, to be proactive in evidencing practice outcomes.

Throughout Australia, Palliative Care services are sporadic in their service design and have varying models of interdisciplinary care. That said, Pastoral Care Workers are a common denominator across all Palliative Care services, having a presence in various forms. Each Pastoral Care role is funded to various capacities requiring service to be designed and tailored to meet the specific demands of the context.

If we are to engage effectively in ‘good’ end of life care in public health we must consider some simple yet complex questions:
• What does it mean to have a good death?
• Who is God if a loved one suffers in their dying?
• What is God asking us to become in the death and dying process?

The role of the Pastoral Care Worker in this context is to both sit with and engage such existential questions at the bedside and down the telephone following death. Often considering these questions in light of the ‘business’ of public health, it seems impossible to integrate them as part of our faith. However it can be suggested that faith gives structure and possibility to such questions as we realise that we are all equipped to engage the questions raised by death and seek resurrection hope.

Questions of suffering in the dying process are not easy to answer yet God becomes a source of our questioning. Tag lines such as ‘gone to a better place’ or ‘now with God’ can be rather unhelpful as we begin to navigate our grief. Perhaps the possibilities that death offer us in this context is to extend our understanding of the grieving community. The nurses, doctors and allied health staff mourn along with families who lose loved ones, grief is shared and in that sharing, God’s love is found. Perhaps a good death is not pain free but rather informed by good grief shared in community, with a common bond with God who is not absent in our suffering.

Media

THE AGE, 8 Dec 2016, “Assisted Dying Laws Don’t Offer Free Choice” Says Terminal Patient, By Rania Spooner.
ABC News 6 January 2017, Palliative Care Services Expansion Call As Demand Increases, By Hamish Fitzsimmonds.
Website: Palliative Care Australia
Movie: The Last Cab to Darwin
Documentary: Euthanasia Deception
Theatre: Assisted Suicide: The Musical

Reports, Books and Articles

Victorian Parliamentary Committee End of Life Choices report
Voluntary Assisted Dying Discussion Paper
AMA Position Statement Euthanasia and Assisted Dying 2016

Dietrich Bonhoeffer, Ethics, ed. Clifford J. Green, trans. Reinhard Krauss, Charles C. West, and Douglas W. Scott, vol. 6, Dietrich Bonhoeffer Works (Minneapolis, MN: Fortress, 2005), 185–203.
Paul S. Fiddes, ‘Acceptance and Resistance in a Theology of Death’, Modern Believing 56, no. 2 (2015), 223–36.
Robert W. Jenson, ‘Thinking Death’, in On Thinking the Human: Resolutions of Difficult Notions (Grand Rapids, MI/Cambridge: Wm. B. Eerdmans, 2003), 1–15.
Hans Küng, ‘Assisted Dying – Also Active?’, in Eternal Life?: Life After Death as a Medical, Philosophical, and Theological Problem, trans. Edward Quinn (London: Collins, 1984), 209–13.
Hans Küng and Walter Jens, A Dignified Dying: A Plea for Personal Responsibility, trans. John Bowden (London: SCM Press, 1995).
Alan E. Lewis, ‘The Theology of Death and the Care of the Dying: Affirmations, Attitudes and Actions’, Theology in Scotland 2, no. 2 (1994), 7–20.
Presbyterian Church (U.S.A.). In Life and in Death We Belong to God: Euthanasia, Assisted Suicide, and End-of Life Issues (Louisville, KY: Christian Faith and Life Area, Congregational Ministries Division, PC(U.S.A.), 1995).
John Swinton and Richard Payne, eds., Living Well and Dying Faithfully: Christian Practices for End-of-Life Care (Grand Rapids, MI: Wm. B. Eerdmans, 2009).
Margaret Whipp, Euthanasia – A Good Death?, Grove Ethics Series E117 (Cambridge: Grove Books, 2000).

Glossary of Terms

Advance Directive
This is a general term describing two kinds of legal documents [See Living Will and Durable Powers of Attorney]. Such documents allow a person to give instructions about future medical care in case they are unable to participate in medical decisions due to serious illness or incapacity. Each state has its own regulations concerning the use of advance directives. Note: The Legislation being considered in Victoria does NOT allow for voluntary assisted dying to be included in an Advanced Plan Directive.

Assisted Death
This is also known as “physician-assisted suicide”, “physician-assisted dying” or “aid in dying” and is legal the US states of Oregon and Washington. It permits mentally competent, terminally-ill adult patients to request a prescription for life-ending medication from their physician. The Oregon and Washington laws mandate that the medication must be self-administered.

Autonomy
This is the exercise of self-determination and choice among alternatives, based on the individual’s values and beliefs.

Brain dead
Complete cessation of cognitive function. Life support systems could keep the body operating but pointless. The point of death is defined by what is known as “the Harvard criteria”.

Continuum of Care
This relates to a course of therapy during which a patient’s needs for comfort care and symptom relief is managed comprehensively and seamlessly. Hospice provides a continuum of care to terminally- ill patients, and aid-in-dying is assumed as the option of last resort at the end of that continuum.

Coma
The National Institute of Neurological Disorders and Stroke defines coma as “a profound or deep state
of unconsciousness. An individual in a state of coma is alive but unable to move or respond to his or her environment.” Comas can result from chronic illness or severe injury/trauma.

Competent/competency
The ability of a person to communicate with a physician and understand the implications and consequences of medical procedures.

DNR / DNI
DNR/DNI stands for Do Not Resuscitate/Do Not Intubate and is a specific physician order. Do Not Resuscitate means that in the event of cardiac arrest, no CPR or electric shock will be performed to re-start the heart. Do Not Intubate means that no breathing tube will be placed in the throat in the event of breathing difficulty or respiratory arrest. Each of these orders may be given separately and are generally prominently noted in the patient’s medical chart. The patient can change a DNR and DNI order at any time, and experts urge that such orders are reviewed regularly. In a DNR/ DNI situation, a patient is provided comfort care. Without such an order, emergency medical technicians are legally required to perform CPR.

Double Effect
This is the doctrine established by St. Thomas Aquinas in the 13th century in which an action that has two effects—one that is intended and positive and one that is foreseen but negative—is ethically acceptable if the actor intends only the positive effect. The doctrine is often used to describe the impact of administering high doses of morphine or terminal sedation—treatments intended to relieve suffering but that often hasten death. Since the intention is comfort care, this is not considered euthanasia and is legal and generally practised throughout the United States and around the world—generally in private and without publicity.

Durable Power of Attorney
This is a document appointing a surrogate to make medical decisions in the event that an individual becomes unable to make those decisions on their own. It is also sometimes referred to as a “health care proxy.”

End of Life
Refers to the care offered in the final hours or days (where Palliative Care may be extended over many months or even years).

Enduring
This term is used in the state legislation as a measure of unbearable suffering that continues, and also as a measure of time that lapses with regard to a patient request.

Euthanasia
This is translated literally as “good death” and refers to the act of painlessly but deliberately causing the death of another who is suffering from an incurable, painful disease or condition. It is commonly thought of as lethal injection and it is sometimes referred to as “mercy killing.”

• Active Euthanasia: This is generally understood as the deliberate action of a medical professional or layperson to hasten a patient’s death.
• Passive Euthanasia: This is generally understood as a patient’s death due to actions not taken by a medical professional or layperson—actions that would normally keep the patient alive.
• Voluntary Euthanasia: This occurs at the request of the person who dies.
• Non-Voluntary Euthanasia: This refers to when a patient is unconscious or otherwise mentally unable to make a meaningful choice between living and dying, and a legal surrogate makes the decision on the patient’s behalf.
• Involuntary Euthanasia: This occurs when a patient’s death is hastened without the patient’s consent. While generally viewed as murder, there are some instances in which the death may be viewed as a “mercy killing.”

Futile Measures
This generally refers to the medical care of patients in which the care will have little or no effect on the patient’s outcome or prognosis.

Guardian Ad Litem
A Latin term for a court-appointed representative who makes decisions in a legal proceeding on behalf of a minor or an incompetent or otherwise impaired person.

Hippocratic Oath
The declaration made by medical doctors setting out the principles and values of being a doctor, declaring their commitment to their profession, their patients and humanity. Read the Code of Ethics used in Australia

Hospice
Hospice is an organisation or institution that provides comfort (a.k.a. palliative) care for dying individuals when medical treatment is no longer expected to cure the disease or prolong life. Hospice sometimes also applies to an insurance benefit that pays the costs of comfort care usually at home for patients with a prognosis or life expectancy of six months or less.

Informed consent
A patient giving permission to a physician to carry out a medical procedure after she/he is made fully aware of the benefits, risks, and any alternatives.

Intent
This is a concept used to draw a moral distinction between aid-in-dying and other acts/omissions that cause death—such as terminal sedation and withdrawing life-sustaining therapy. “Intent” assumes the ability to draw a clear distinction between knowledge of a certain outcome and an intention to produce that outcome.

Life-Sustaining Treatment
This is any treatment, the discontinuation of which would result in death. Such treatments include technological interventions like dialysis and ventilators. They also include such simpler treatments as feeding tubes and antibiotics.

Living Will
A “living will” is a type of advance directive containing instructions about future medical treatment in the event the individual is unable to communicate specific wishes due to illness or injury. Each state has its own regulations concerning the use of living wills.

Mercy Killing
Term loosely used to describe all acts of euthanasia. Best defined as ending another person’s life without explicit request in the belief that it is the only compassionate thing to do.

Minimally Conscious
This state was described in the February 12, 2002 edition of Neurology as qualitatively distinct from coma and vegetative states. For example, patients who are “minimally conscious” are impaired but have some capabilities, such as the ability to reach for and grasp objects, track moving objects, locate sounds, and process and respond to words. Patients may inconsistently verbalise or gesture to communicate, and patients may regain full consciousness. However, minimal consciousness may also be permanent.

Murder/Homicide
Unlawfully slaying a person who wished to live.

Negotiated death
A formal agreement between family, physicians, hospital management, etc, that life support systems to an incompetent person are better disconnected in the best interest of the patient. All parties agree not to bring lawsuits.

Palliative Care
This medical speciality is often associated with hospice; however, it can also be used independently and alongside curative treatments. Palliative care is available in every state, appropriate for anyone at any stage of life suffering with a debilitating illness– terminal or not–and focuses on pain management and providing comfort. Palliative Care may be extended over many months or even years (where as End of Life care refers to the care offered in the final hours or days).

Persistent Vegetative State
Some comatose patients lapse into a persistent vegetative state. According to the National Institute of Neurological Disorders and Stroke, patients in such a state “have lost their thinking abilities and awareness of their surroundings, but retain non- cognitive function and normal sleep patterns. Even though those in a persistent vegetative state lose their higher brain functions, other key functions such as breathing and circulation remain relatively intact. Spontaneous movements may occur, and the eyes may open in response to external stimuli. They may even occasionally grimace, cry or laugh. Although individuals in a persistent vegetative state may appear somewhat normal, they do not speak and they are unable to respond to commands.”

Physician-Assisted Death/Physician-Assisted Suicide
These terms are synonyms for assisted death.

Refusal of Medication/Treatment and Nutrition/ Hydration
Terminally-ill patients who feel they are near the end of life may legally and consciously refuse medication, life-sustaining treatments, nutrition and/or hydration. Published studies indicate that “within the context of adequate palliative care, the refusal of food and fluids does not contribute to suffering among the terminally ill”, and might actually contribute to a comfortable passage from life. “At least for some persons, starvation does correlate with reported euphoria.”

Right to die
Popular general term reflecting a basic belief that end-of-life decisions should be an individual choice.

Right to choose to die
A more accurate term for the above.

Right to life
Popular general term for the belief that death should only come about by the will of a deity, or the belief that life is the prevailing value, regardless of medical conditions or desires to end it for whatever reason.

Self-deliverance
A person irreversibly ill who makes a rational decision to end his or her own life. This term is preferred by those who consider it mistaken to equate this type of action with suicide.

Snow (Slang)
Administering heavy doses of opiate drugs to completely sedate a person who is dying painfully. The person dies whilst unconscious.

Studied Neutrality
This refers to various medical organisations recognition of and respect for the diversity of members’ personal and religious views and choices — as well as those of their patients — in order to encourage open discussion about all end-of-life options.

Suicide
Suicide is generally defined as the act of taking one’s own life voluntarily and intentionally — generally
as the result of an individual’s self-destructive impulse and mental illness and often independent of a terminal illness. Because a terminally-ill adult patient who is deemed mentally competent chooses to hasten his or her death through a physician’s assistance, “physician-assisted dying” is more accurate than “physician-assisted suicide.”
• Rational suicide: Ending one’s own life for considered reasons, as opposed to emotional or psychological ones.
• Silent suicide: Starving oneself to death. Usually carried out in extreme old age.

Surrogate Decision Making
This is a procedure that allows a loved one to make medical-care decisions in accordance with a patient’s known wishes. If the patient’s wishes are not known, the decisions are generally said to be made in the patient’s “best interests.” Surrogate decision making is not being considered in Victorian Legislation.

Terminal Sedation
Generally practised during the final days or hours of a dying patient’s life, this coma-like state is medically induced through medication when symptoms such as pain, nausea, breathlessness or delirium cannot be controlled while the patient is conscious. Patients generally die after as a result of the sedation’s secondary effects of dehydration or other intervening complications.

Withholding/Withdrawing Treatment
This refers to omitting or ending such life-sustaining treatments as ventilators, feeding tubes, kidney dialysis or medication that would otherwise prolong the patient’s life. This legal act may be upon the patient’s request, as the result of an advance directive or based upon the medical determination of futility.

Glossary compiled from the following organisations websites:
https://www.deathwithdignity.org/ assisted-dying-glossary/
http://www.finalexit.org/glossary_assisted_suicide. html

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