A Good Death

Monday, 6 June 2016  | Megan Best

Harry was what you might call a rough diamond. He came into our palliative care unit to die. He wasn’t so much scared of dying as unsettled by it. He found it difficult to cope with his cancer symptoms. You could say he was suffering.

Many studies have examined what contributes to a ‘good death’. The term was used by euthanasia advocates in the 1960s and 1970s to protest life-prolonging measures that were becoming more common with the widespread introduction of life-sustaining medical technology. This may explain why the turning off of life-prolonging treatments has been mistakenly confused with euthanasia. Life-support is used to support a patient long enough to enable them to recover; if withdrawal of life-support leads to death, it is not this act that kills them, but progression of the underlying condition. Similarly, if treatment that was originally aimed at increasing survival no longer works or is beneficial, again ceasing such treatment is not euthanasia. Prolongation of life is not the same as the prolongation of the process of dying.

Foregoing potentially life-prolonging treatment, for example anti-cancer therapies, is a completely ethical and legally permissible option. No biblical maxims insist that we should do all we can to prolong life. To do so would be to treat life itself as an idol. We all have to die of something, and if you have had a good life and are ready to meet the Lord, it is okay to let go of life and let the disease run its course.

But Harry is suffering. Is he a classic case for euthanasia?

Well, he hasn’t mentioned it at this stage. Requests for euthanasia are quite unusual, and we who work in palliative care find they often are dropped once care has started. Palliative care is a relatively modern specialty. Its purpose is to improve the quality of life of patients and their families facing life-threatening illness, through the prevention and relief of suffering through early identification, assessment and treatment of pain and physical, psychosocial and spiritual problems.[1]

More recently, clinicians caring for patients at the end of life have started to explore the term ‘good death’ more literally, with careful questioning of patients, families and health care workers to ascertain what would contribute to a peaceful and meaningful end of life experience.

A review of the literature in 2006[2] found that a good death differs for each individual, and is influenced by the patient’s perspective and experience. Furthermore, it is dynamic and can change over time. Facilitation of a good death will require ongoing dialogue with the person involved, without preconceived ideas of what they will say.

So what could we do for Harry? He was in pain, and required morphine in regular doses to control his symptoms. However, he was hesitant to start the recommended treatment. This is not uncommon in palliative care, as myths about morphine are rife. One is that if you take morphine for pain you are at risk of addiction, which in fact is very rare. Another is that morphine will shorten your life, a myth promoted by the euthanasia lobby who suggest that direct lethal injection (what they call ‘active euthanasia’) is ultimately no different to using medication and sedatives for symptom control (what they call ‘passive euthanasia’). In reality, research shows that therapeutic doses of morphine and other drugs may in fact prolong life, probably because the patient is more comfortable. We who work in palliative care know how to use the correct dose needed to control the symptoms. Comfort is the goal.

Eventually, Harry is persuaded and treatment is started. The pain control improves but there is still something not quite right. Late one day I go into Harry’s room and have a chat – I have been seeing him in the clinic for over a year and he trusts me. Early referrals to palliative care allow us to build relationships and to support our patients better, potentially increasing the chance of survival.[3] I ask what is important for him now that his time is short. It turns out that Harry has never told his sons how much he loves them, or that he’s in hospital.

Despite the individual nature of end of life preferences, there are some attributes of a good death that remain constant across populations.[4] These include being in control, being comfortable, having a sense of closure, value of the dying person being recognised, trust in care providers, recognition of impending death, respect for the individual’s beliefs and values, minimisation of burden for the patient and their family, optimisation of relationships, appropriateness of death, leaving a legacy and family care.

There are many ways one can be in control at the end of life. The media focuses on a self-chosen death as the only way to have control, but it is also possible to be in control by communicating your wishes to those who care for you and having them respected. Our federal government is investing in advance care planning, whereby we can discuss with our health care providers the type of treatment we would or would not want if we were unable to express our wishes at the time. You can also choose which people you want present, and where you would like to be in your final illness. Harry had initially wanted to die at home, but as the time got closer and his nursing requirements got more complicated, he decided he would rather be in the palliative care unit with staff on call – an example of how the concept of a ‘good death’ can change.

Being comfortable is also important. This obviously includes physical comfort, though interestingly not everyone wants to be completely symptom-free (perhaps due to cultural or religious beliefs). It also includes emotional and spiritual well-being, the latter being as important for quality of life for cancer patients as physical well-being. Hence the need to enquire about spiritual needs, even when time is short. <FN5> Spiritual care should not be confused with religion, which is a subset of wider community spirituality. Religion and making peace with God is not the universal spiritual framework. Tasks of the dying include saying goodbye, completing unfinished business and preparing for death. It always astounds me that family members and healthcare workers can hesitate to let an individual know when they don’t have long to live. Such information is a gift, which allows the person involved to do the important things while they still have time.

Palliative care workers can provide the initial encouragement to address these aspects in their lives, often by affirming the individual and letting them know that they matter even if they are sick and unwell. To be recognised as a whole person is to treat a human being with the dignity as one made in the image of God, whether or not they are judged by society as ‘capable’.

Harry has contacted his sons and they’re coming in on the weekend. He is nervous but excited to see them. As palliative care considers the family of the patient part of the care unit, inpatient units tend to have flexible visiting hours, and often family can stay overnight if desired.

When I come in the next week, Harry is more settled. Later I hear that his time with his sons went well and that he was able to tell them how much he cared. We often find that, when spiritual well-being is addressed, the physical follows. We need to care for the sick in a holistic way.

Harry passes away several weeks later. It is a peaceful death, and I think he and his sons would have said he had a good death. He had lived until he died, and left no unfinished business. That was what he wanted.

The palliative approach to care is recommended for all doctors caring for dying patients, that is, one where the goal of treatment is comfort rather than cure. Not everyone will need a palliative care team to have a good death, but it can sometimes help. One of the biggest gaps in Australian health care today is adequate specialist palliative care provision for those who need it. Minority groups, children, private patients, and rural and remote communities miss out most. Surely we can do better.

Dr Megan Best works as a palliative care doctor in Sydney, and is the author of Fearfully and Wonderfully Made: Ethics and the Beginning of Human Life (Sydney, Matthias Media, 2012).

This is a condensed version of Megan’s article in the forthcoming (Winter) Zadok Perspectives on ‘end of life’. Subscribe to Zadok Perspectives here to read the full version and a contribution from a range of perspectives.

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