End of Life Choices for Cancer Patients: An International Perspective

Chapter 1: Introduction and Summary

Ruth E. Board, Michael I. Bennett, Penney Lewis, Peter Selby

There have been impressive improvements in the diagnosis and treatment of cancer in recent decades. In economically advantaged countries with well-developed healthcare systems, over 50% of all cancer patients achieve long-term survival and are probably cured.¹ This much-improved outcome may be compared with a figure of only 25% in the latter half of the 20th century in these countries.¹ Not only has survival improved radically for cancer patients but also there has been an increasing focus on the quality of patients’ lives, on improving the patient experience of care and on developing effective support for the very many cancer survivors.¹

Major scientific and technological developments are continuing and the practice of oncology is becoming more precise and with more accurate patient selection for appropriate treatment.² In addition to surgery, radiotherapy and chemotherapy, there are important developing and successful new modalities of treatment, including immunotherapy³ and interventions that can destroy tumours using heat, cold, electricity, radio waves and ultrasound without major surgical procedures. There still remain many challenges to be addressed if we are to continue to improve cancer therapy and its outcome. Not only must we vigorously pursue the scientific and technical advances that are providing improvements but we must also ensure that care for cancer patients is well organized with timely access to the appropriate diagnosis and treatment.¹ We must provide high-quality and timely support for patients who have acute medical problems and complications from cancer.⁴ We must recognize that cancer is most commonly a disease of elderly people and adjust our approaches to make them feasible and acceptable for all patients.⁵

Despite the progress outlined above, a substantial number of cancer patients will still ultimately die of their disease. For many this will follow periods of successful treatment that resulted in good remissions and good quality of life. However, when patients relapse, the disease may become resistant to available treatment. Helping patients to make the right choices about their care towards the end of their lives is one of the greatest and most challenging responsibilities of all healthcare professionals. Choosing treatments to relieve symptoms is often difficult. Decisions on the continuation of specific anticancer treatments to prolong life or relieve symptoms are complex and uncertain and depend greatly on our ability to elicit the patient’s needs and preferences. The involvement of partners, family and friends is often important but must be achieved without overshadowing the patient’s own views. Oncology and palliative care professionals from many disciplines work together in teams in order to provide the best possible help for their patients.

There is currently an added dimension that we feel needs to be considered. Legal change on the provision of assisted dying by healthcare professionals has occurred in a substantial number of jurisdictions. There is some pressure for change in UK law and some UK patients travel to other jurisdictions to access assisted dying.

The Association of Cancer Physicians’ workshop

The workshop of the Association of Cancer Physicians (ACP) ‘End of life choices for cancer patients: an international perspective’ was held in Leeds in May 2019 and brought together colleagues from oncology disciplines, palliative care, law, nursing and professions allied to medicine. The goals were to allow an exchange of information through formal presentations and discussion:

• to better inform ACP members and the wider community about developments in choices in end of life care for cancer patients in the UK and internationally;

• to be better able to answer questions from patients and respond to their requests, including questions about and requests for assisted dying in countries outside the UK;

• to have a balanced and well-informed dialogue about choices available to patients in the UK and internationally, without developing a formal ACP position on change in UK law;

• to provide a basis of information for future educational activities.

Definitions

The topic of assisted dying involves a wide range of terms and definitions that are constantly changing. In the ACP workshop and publication we have used the terminologies shown in Box 1.1 below.

Box 1.1 Definitions.

•Euthanasia: An intervention undertaken with the intention of ending a life to relieve suffering. In the Dutch and Belgian contexts, the term euthanasia refers only to the termination of life upon request.

Some common (and often confusing) modifiers of euthanasia are:

– Active: A deliberate intervention to end life.

– Passive: Withdrawal/withholding of life-sustaining treatment.

– Voluntary: At the request of the person killed.

– Involuntary: In the absence of a request by the person killed, although that person is competent.

– Non-voluntary: In the absence of a request by the person killed, when that person is not competent and has not made an advance request for euthanasia.

•Assisted suicide: Any act that intentionally helps another person to commit suicide, for example by providing him or her with the means to do so. In the Netherlands, assisted suicide is often included in the term euthanasia. Legal regimes often permit only physician-assisted suicide.

•Assisted dying: (Voluntary, active) euthanasia and assisted suicide.

•Physician-assisted death: This includes physician-administered voluntary euthanasia and physician-assisted suicide.

•Medical assistance in dying (MAID): Used most recently in Canada and includes physician-assisted suicide and clinician-administered voluntary euthanasia.

The legal debate on assisted dying in the UK

As we will discuss in Chapter 4, assisted dying, whether in the form of assisted suicide or voluntary euthanasia, is illegal in the UK in all jurisdictions. However, in any year several dozen people from the UK travel abroad for assistance in suicide or euthanasia. Doubts and uncertainties about the role of family members in helping them do so cause considerable anxiety. However, in February 2010, the Director of Public Prosecutions set out the factors to be considered when deciding whether a prosecution in an assisted suicide case is in the public interest (the policy is discussed in Chapter 4). The policy suggests that it is unlikely to be in the public interest for a loved one who has provided assistance to be prosecuted if the person who travelled to another jurisdiction for assistance with suicide had reached a voluntary, clear, settled and informed decision to do so, and the loved one who had helped them was motivated by compassion.

In the UK there have been attempts to change the law on assisted dying since 1931, when a voluntary euthanasia bill was proposed. The Voluntary Euthanasia Society was formed in 1935. This society is now known as Dignity in Dying. Another attempt at legal reform was made in 1936, and again in the House of Lords in 1969 and 1976. An assisted dying bill was introduced into the Commons in 1997 but was defeated. Lord Joffe introduced bills between 2003 and 2006 without success. Lord Falconer introduced an assisted dying bill into the House of Lords in 2014, proposing that patients with a life expectancy of less than 6 months should have the choice of a medically assisted death, but it did not succeed. In 2015, the MP Rob Marris brought forward a private member’s bill proposing assisted suicide, which was substantially based on Lord Falconer’s proposals. The bill was defeated in the House of Commons in September 2015. In 2016, Lord Hayward introduced an assisted dying bill in the Lords, but it did not progress.

The law in Scotland is of course different from the law of England and Wales. Most recently, in 2015, a proposal to change the law was defeated in the Scottish Parliament. In February 2019, a group was formed in the Scottish Parliament seeking to attempt to reform assisted dying law in Scotland. There have been no recent efforts to change the law in Northern Ireland.

Among Crown dependencies and overseas territories, the Falkland Islands’ representatives voted in July 2018 to allow assisted dying for the terminally ill subject to safeguards, in principle indicating a willingness to change their law if the UK did so. On the other hand, also in 2018, representatives in Guernsey voted against a change in the law to allow access to assisted dying. Currently there is an ongoing debate in Jersey, in response to a petition, and Jersey’s health minister has called for laws banning assisted dying to be reviewed.

Among Commonwealth countries, Canada has recently changed its law following a successful constitutional challenge (discussed in Chapter 5). The Australian state of Victoria’s Voluntary Assisted Dying Act came into effect on 19 June 2019.⁶ A similar law in Western Australia was passed by the state legislature in December 2019 and is likely to come into force in 2021.⁷ The New Zealand Parliament has recently debated and approved an approach to the provision of assisted dying in New Zealand and is placing its proposed detailed legislation before the citizens of New Zealand in a referendum.⁸ In Chapters 3 and 5 we will describe the approaches to choices at the end of life that have been developed in other countries and in particular focus on the recent experience in Canada over the last 3 years. The international situation remains dynamic.

Against such a complex background we have sought in our workshop and this publication to provide an informative and balanced review of international experience and current UK relevant healthcare practice for healthcare professionals and those considering a change in the law in the UK.

Summary of the workshop and this edited collection

Dr Ruth E. Board gave an oncology and patient-centred overview of the choices faced by cancer patients, which is presented in Chapter 2. She introduced the debate on assisted dying and reported recent survey evidence of the attitudes of UK clinicians to possible changes in legislation. The recent survey evidence from the Royal College of Physicians and the Royal College of Radiologists indicates a change in attitudes among oncologists. The professionals surveyed are, according to these data, broadly neutral in their attitude to