What next for palliative care and assisted dying?

THE parliament of Victoria passed a Bill on 3 December 2017 to allow voluntary assisted dying. It brought that state alongside jurisdictions in several nations or individual states of Europe and North America where similar legislation has been enacted. Twenty previous attempts in Australian state parliaments to legalise “euthanasia” (as it is commonly termed) had failed. Only in the Northern Territory had such a law passed, in 1995, and been overturned in the following year by the federal parliament.

In Victoria, the Bill came to the parliament with a number of salient advantages. It was introduced not by a private member (as had usually been the case in earlier attempts), but by the incumbent Labor government, with the full support of the Premier and Cabinet. Over the previous 2 years, the issue of assisted dying had been under close consideration — first, by a committee of the Legislative Council, which had undertaken wide consultation and detailed review of many related issues. The Committee’s Report in 2016 made numerous recommendations, including that palliative care services be strengthened and that the law be changed to allow assisted dying.

The Minister for Health and Community Services sought, from an expert advisory panel of seven members, further advice about how that recommendation might be achieved. The panel met regularly through the first half of 2017, and its report in June 2017 presented 66 recommendations and 68 safeguard provisions, which established a framework for the drafting of the Bill. The Minister presented the Bill to parliament in September 2017 as a comprehensive and complete package, embodying a conservative approach — its stringent, detailed requirements making it resistant to amendment. It was agreed that all members be granted leave to speak to the Bill, and an individual conscience vote was allowed by all parties.

Assiduous preparation did not protect the Bill from intense controversy and objection in the media and in parliament. Debate in the Legislative Assembly stretched through 26 continuous hours and considered over 100 proposed amendments, all of which were rejected when the Bill finally passed by 47 to 37 votes. It went to the Legislative Council, where debate again required night-long sittings. Several relatively minor amendments were agreed, touching on matters of timing and referral, and on the safe-keeping of the lethal dose of medication to be employed. The amended Bill returned to the lower house and was passed without further change.

The Bill disappointed many established advocates of euthanasia in its clear exclusions, its stringent and restrictive eligibility criteria, and its necessary diligent processes of referral, reporting and oversight. Relatively few dying persons will be eligible to access voluntary assisted dying. Continuing protest must be expected also from the many individuals and special interest groups that have been consistently adamant in opposition.

The legislation now enters an implementation phase and will not be proclaimed until details are finalised on how voluntary assisted dying will operate in practice. Delay into 2019 will allow interested parties to consider how the availability of voluntary assisted dying will affect individual decision making, professional practice and institutional policy.

In opposition to the Bill palliative care services carried considerable weight, with warning to of the legislation's deleterious effects on palliative care. Spokespersons voiced the claim that assisted dying would be seen as a cheap and quick alternative to the expense of providing palliative care among a number of other objections along these lines:

• palliative care’s charter is to ensure comprehensive comfort to dying persons, with no interventions to either extend or shorten life;
• the provision of appropriate comprehensive care for a dying patient is a special skill. Only palliative care services are equipped to do it effectively and the assisted dying alternative threatens erosion of that expertise;
• gaps in palliative care services will force persons unable to access their care to rely on assisted dying;
• the public is better served by an urgent strengthening of palliative care than by investing in assisted dying;
• the introduction of assisted dying is an affront to palliative care, implying unjustly that its services cannot adequately meet the needs of dying patients;
• assisted dying runs counter to the values consistently affirmed by palliative care to sustain quality of life and never to kill; and
• assisted dying will lead inevitably to a “slippery slope”, and vulnerable persons – individuals who are poor and disadvantaged or have disabilities – unable to access expensive health care, will be encouraged to request assisted dying by families and by doctors prepared to bend the rules.

Many staff in Victoria’s palliative care services have been drawn to this specialty’s special characteristics: its offer of holistic care that attends to spiritual as well as physical and emotional concerns, and its patient-centred approach that seeks to avoid medical hubris and inappropriate therapeutic activism. Also, important to many is its close historical association with Christian charitable and moral intent. Palliative care favours asking a dying patient “what matters most to you?”, and frames a responsive plan of management that can include measures far removed from conventional hospital investigations and drug prescriptions, though they will not be ignored. The presence of a compassionate caring person and attention to simple nursing measures for comfort can be as effective as prescribed drugs. Nurses, in particular, are drawn to this type of care – “This is why I did nursing”.

The arguments against assisted dying from palliative care workers usually avoid mention of underlying ideological and religious considerations, important to the sector. The Roman Catholic Church, in particular, has accepted a major role in opposing assisted dying. It has a proud tradition of pioneering care for dying persons. Orders founded by remarkable 19th century women – Mary Aikenhead’s Sisters of Charity in Ireland and Mary Potter’s Little Company of Mary in Britain – brought to Australia their concern that the souls of dying persons should have the best preparation for purgatory, and recognised the importance of physical care in the nurture of the soul. In this tradition, suicide is a mortal sin; killing is worse, and assisted dying is killing. Throughout Australia, Catholic hospitals, hospices and aged care facilities provide the majority of inpatient beds available for palliative care, and also promote associated community home care programs. Church spokespersons state that assisted dying cannot occur within Catholic facilities and that their staff will not provide it, which raises significant difficulties for both assisted dying and palliative care. Other care options such as a public hospital or home care placement will need to be sought if a person receiving care in a Catholic facility requests assisted dying.

Palliative care professionals recognise a common defensive stance in the care offered by specialist colleagues in other disciplines to persons with a terminal illness. Too often there is continuation of futile therapies and delay in referral to palliative care services. A common message heard is: “He’s not ready for you yet”.

Palliative care has its own defensiveness, however, based on its claim of being special, both in its skills and in the caring relationships maintained with its client families. It brings not only effective symptom relief, but also a care founded in compassion and commonly directed with Christian conviction. This encourages a view that “only we can do it”, that the care it offers is essentially “good” and accords with the commandments of God.

In countries where assisted dying has been introduced, palliative care has continued to flourish and grow. It is reasonable to expect a similar improvement in Victoria, as assisted dying becomes available. The Victorian Government has made a clear commitment to strengthen palliative care services. The Bill just passed requires that palliative care is acknowledged and recommended to all persons requesting assisted dying.

Neither professional bodies nor religious foundations can claim absolute exemption from charges of coercion or abuse, yet they point to the threat of these with assisted dying. The continuing involvement of palliative care in all settings is one of the strongest safeguards for a dying person against any such risk.

Personal religious conviction helps govern and guide individual choice, and conscientious objection to personal participation in assisted dying is acknowledged and respected by the Victorian legislation. Its weight, in matters of policy and law in a secular and multi-ethnic community such as the state of Victoria, is more open to question. Individual conviction should not impose its religious values and views on others. Those who hold such convictions should be prepared to declare them openly. A Catholic institution clearly is entitled to exclude assisted dying from its facilities. How it will manage a request for assisted dying remains unclear, but health authorities and the public need to be confident that palliative care will continue to play its major role in care for all terminally-ill persons, including those who have opted to request assisted dying. That reassurance needs to be heard from those palliative care staff who oppose assisted dying.

What lies ahead for assisted dying and palliative care? The acknowledged dedication to best practice among palliative care staff feeds confidence that palliative care and voluntary assisted dying will find separate and complementary but not competitive roles, respecting each other in a common focus on the care of persons who experience major discomfort in progressive, advanced terminal illness.

Emeritus Professor Ian Maddocks was appointed to the pioneer Chair of Palliative Care at Flinders University of South Australia in 1988, and subsequently elected foundation president of both the Australian Association for Hospice and Palliative Care (now Palliative Care Australia), and the Australian and New Zealand Society of Palliative Medicine. Study of theology during medical undergraduate years fostered interest in ethical and religious issues, and 14 years in Papua New Guinea encouraged understanding of ethnic diversity. Since retirement in 2015, he has continued to comment on health care, community medicine and medical ethics. In 2017, he was a member of the Ministerial Advisory Panel established by Victoria’s Minister for Health and Human Services to help prepare legislation for voluntary assisted dying.

 

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