Navigating end-of-life issues

We know that, as Christians, we need not fear death, thanks to Jesus’ victory over the grave that first Easter. But facing our mortality and that of the people we love is never easy. Navigating all kinds of legal, ethical and medical end-of-life issues is often highly emotional, stressful and complicated. We asked Dr Clare Seligmann, a GP with a particular interest and expertise in aged care and palliative care and a member of the LCANZ’s Committee for Ministry with the Ageing, for her insights on some of these topics.

by Clare Seligmann

In the 20th century, medicine and improved public health measures in Australia were very successful in increasing life expectancy. However, this has changed the pattern of ageing and the pattern of dying.

Increased longevity has created a new population of people burdened with complex and chronic disease and ‘advanced frailty’. For this population, the traditional models of care, focusing on curative and life-prolonging treatments, without having concurrent goals of enhancing the quality of life for patients and their families, can contribute to unnecessary and prolonged suffering at the end of life, according to the Australian & New Zealand Society of Palliative Medicine.

Many people find it hard to face the dependency, helplessness and discomfort that often accompanies ageing, chronic disease and impending death. They need increased support from family, carers, health practitioners and chaplains – and they need to be respected, cared for and loved as people created and loved by God.

The LCANZ, through aged care and other pastoral care ministries, has opportunities to serve people at the end of life in physical and psychological caring; and providing spiritual care to assist with a ‘good death’ for those in our care. That’s the ethos that underpins the service of many of our church’s care agencies, such as the Queensland District’s Lutheran Services.

Just as having a legal will plays a significant role in ‘getting our affairs in order’ before we die in terms of the material and financial, advanced-care planning has a very important function for other end-of-life considerations.

It is a journey with people and their families which includes starting the conversation about death; establishing the person’s priorities for their life and any goals that are outstanding; discussing values and beliefs and what will help quality of life; discussing specific details about treatments and symptom management; and documenting the conversation.

There are also legal documentation processes prepared in advance, that assist with decision-making if a dying person loses their decision-making capacity. In addition to a will, these include appointing an enduring power of attorney/s for health and finance matters and completing an advance health/care directive, depending on the jurisdiction across Australia and New Zealand.

A term we often refer to within end-of-life contexts is palliative care, which even applies to non-specialist care. It is defined by the World Health Organisation (WHO) as: ‘ … an approach to care that improves the quality of life of patients (adults and children) and their families who are facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and correct assessment and treatment of pain and other problems, whether physical, psychosocial or spiritual. Palliative care also respects the choice of patients and helps their families to deal with practical issues, including coping with loss and grief throughout the illness and in case of bereavement.’

Appropriate palliative care is not confined to end-of-life care and can be provided in parallel with curative treatment, having different goals and focus. Palliative care is usually multidisciplinary and it is part of whole-person care that is not disease-specific and therefore can be complementary to curative treatment.

Again according to the WHO, when considered early in the course of the illness, palliative care not only improves the quality of life for patients, but also reduces unnecessary hospitalisations and the use of health services. Palliative care is never about withdrawing treatment or ‘doing nothing’. It requires as much work and expertise as curative treatment, but the goals are different. Access to palliative care is considered a human right by the WHO.

Specialist palliative care is only one component of palliative care service delivery. A sustainable, quality and accessible palliative care system needs to be integrated into primary health care, community and home-based care, as well as supporting care providers such as family and community volunteers.

Recognising when a person is approaching the end of their life is essential to delivering appropriate, compassionate and timely end-of-life care. There needs to be rigour in the assessment of symptoms and, that includes physical, cognitive, psychological, social and spiritual domains.

A formal diagnosis of the ‘terminal phase’ needs to be made so this phase can be managed effectively. Care of the dying should be considered ‘urgent care’ that is managed by those skilled in this area. It is as important as care for reversible or curable conditions, a stance backed by the Australian Commission on Safety and Quality in Health Care (ACSQHC).

When it is recognised that a person has entered the terminal phase, this needs to be communicated to the person, substitute decision-makers and family members. Uncertainties and ambiguities need to be discussed openly and communication needs to be on-going. This will empower people and their families to direct their care, where possible, and express needs and wishes for this phase. Documentation of communications is important for future reference and decision-making.

There are ethical issues that need to be considered in end-of-life care, as explained by the ACSQHC:

• It is important not to harm people approaching the end of life by providing burdensome investigations and treatments that can be of no benefit.
• Doctors are not obliged to initiate or continue treatments that will not offer a reasonable hope of benefit or improve the person’s quality of life (unless required by law).
• People also have the right to refuse treatments. This may be in advance, formally in an advance health directive or informally in the documentation of conversation or consultation with the person.

Providing palliative care is legal, so long as the health professional intends to reduce or relieve a patient’s pain and suffering, not hasten their death. The majority of interventions given in end-of-life care by skilled health care teams neither hasten nor obstruct the person’s natural dying.

Care of the person and their family extends beyond death. Respectful treatment of a person’s remains and observance of cultural or religious practices need to be considered. Families also need to be cared for with appropriate time and space to grieve and follow up with bereavement counselling if this is wanted.

If end-of-life care is well managed, symptoms should be minimised and the transition from life on earth, through death to life in eternity, made as smooth as possible. In most cases, suffering at the end of life can be prevented or significantly reduced. It is often suffering and loss of control that people fear more than death.

The most controversial topic in the end-of-life area is euthanasia – the deliberate act of one person to end the life of another person to relieve that person’s suffering. Physician-assisted suicide occurs when a person requests a doctor to assist them in committing suicide. Both euthanasia and assisted suicide are currently illegal in most Australian states and territories and may result in a person being charged with murder, manslaughter or assisting suicide. However, voluntary assisted dying has been legal in Victoria since 2019 and will become legal in Western Australia in the middle of this year. New Zealanders last year voted in a referendum to legalise euthanasia, with the new law expected to come into effect late this year.

The LCANZ’s Commission on Social and Bioethical Questions CSBQ has a statement on this subject ‘Euthanasia or Mercy Killing’, which rejects the practice in all its forms, ‘because such killing is contrary to the word and law of God’. Adopted by the General Convention of Synod in 1981, you can read this on the LCA website (www.lca.org.au/social-bioethical-questions – Papers adopted by General Synod). Lutherans for Life, which is accountable to the church through CSBQ and promotes the sanctity of life, also offers resources and information on end-of-life issues (see story, page 11).

Rather than euthanasia, the church calls for greater efforts to improve and extend palliative care and other measures to reduce suffering in our society. Such measures have demonstrated productive outcomes in the management of pain and the care of those at the end of their earthly life.

Dr Clare Seligmann is the General Practitioner representative on the Queensland Health Department’s Frail Older Persons Collaborative. She served as chairperson of the LCANZ Queensland District’s Lutheran Services council from 2009 to 2019. She is a member of the Royal Australian College of General Practitioners, the AMA and the Australian & New Zealand Society of Palliative Medicine. She worships at St Peters Indooroopilly in suburban Brisbane.