Living at the end of life

Is the way we think about the end of life wrong? What if we thought of it as a time of living, not dying? Dr Alan Barnard, a family doctor and senior lecturer in palliative medicine at the university, gave one of this year's Summer School classes on palliative care – reflecting on the history of palliative care, and what we stand to learn from it.

The field of palliative care has its recent origin in the movement initiated by the late Dame Cicely Saunders, who founded St Christopher's Hospice, London, in 1967.

The principles of palliative care, as articulated in the World Health Organisation definition, were drawn into the public discourse by her single-minded determination to make a difference to the lives of those with life-threatening and indeed terminal illness.

A nurse-turned-social worker, she retrained as a doctor and set about establishing a service for those people whose medical condition had progressed beyond the stage at which cure was a feasible goal of treatment.

The principles of respect and non-abandonment meant that these people could not be left to suffer and die alone, or be dumped on the doorstep of anxious relatives, or in the curtained recesses of a medical ward where the objective of admission was first diagnosis and then cure.

The terrified junior doctors were often left to share the news that "there was nothing more that could be done" – a phrase that is anathema to any sensitive and semi-competent clinician – nurse, doctor or anyone else in the team.

The hospice movement arrived in southern Africa early in 1979, with the founding of Island Hospice in Zimbabwe. The St Luke's and Highway hospices in Cape Town and Durban respectively began serving the community in 1980. Each of these is still active and serving, with many more around the country and further afield in Africa.

There are many models of delivery, but always in and with the community being served.

Hospice is not a place, it has been said. It is rather an approach to care. Not what is done, but the way that it is done. That "there is nothing more that can be done" is perhaps a clumsy way of saying that the objective of treatment is no longer cure.

Patients and relatives themselves may often have put this interpretation on the admission by the doctor that further treatment by anti-cancer chemotherapy drugs or radiation was futile – no longer reasonably able to offer a good (longer) life balanced against the cost of that treatment, both the adverse effects and the financial expense.

There are many caring and gentle oncology professionals who are careful to introduce this conversation of bad news sensitively, and who follow this up with support and appropriate referral and teamwork with family doctors or specialist palliative care providers like hospices.

The question "how long have I got, doctor?" is frequently asked, particularly when the cancer has spread widely, or the HIV/AIDS is progressive and not responding to treatment – the next opportunistic infection may just be the last.

The art of prognosis is just that – an art. Scientific study of different treatment options show different cohorts of research subjects behaving differently – six-month survival of 50% in one cohort and 2% in another.

The patient being given these statistics often takes home one message: six months. When the six months has come and gone, these people are either triumphant or indignant. Beaten the odds or desperate to be beaten.

Another way to think about the question of prognosis and "how long have I got?" is in the frame of the surprise question.

Dr Joanne Lynn proposed that professionals should ask: "Would I be surprised if this patient was to die in the next six months?"

If the answer is "no", then the palliative care approach should be brought to the fore in the management – medical, psychosocial and spiritual.

Six months is both a short time, and a long one.

It is short enough to bring into clear focus the priorities and preferences of the patient and family, and long enough to have important conversations, make wishes known and prepare for a dignified and comfortable going.

If there has been no opportunity to prepare, then these important life events unwind and sometimes unravel.

An important palliative care principle is that the patient is never treated in isolation, but always considered in the context of family and community.

The transition in the care of the patient that has been carefully husbanded leaves the patient and family secure and contained in their non-abandonment.

There is always more that can be done: excellent pain assessment and treatment, control of symptoms other than pain, support to the family and carers, spiritual care and material assistance, especially when the cost of accessing care has drained the resources of the family.

Spiritual care in this context is sometimes conflated with religious observation. This is not the intention in sensitive palliative care delivery, even though many hospices had their origins in church communities.

Historically, the word "hospice" meant place of refuge for travellers.

Religious orders welcomed all-comers; and some cared for the ill and the dying.

Spiritual care in current palliative care practice takes note of the fact that people of all religious belief and those who profess none need to consider meaning and legacy as part of the journey.

Many people struggle with faith at times like this and yet others show deep commitment and faithfulness despite and even because of the illness and imminent dying.

The exploration of these themes and the accompaniment of people in this process is the role of the spiritual counsellor in the palliative care team.

The recognition by Dame Cicely and her supporters is that the patient at the end of life is not in fact dying, but really living, albeit with a short time before death.

The dying process was recognised as a very particular stage of life with diminishing faculties and increasing dependence. Those who care for people at the end of life have much the same role as midwives who take care of the very basic and ordinary matters of physical life.

They recognise that the recipient of their caring is unable to reciprocate, has limited means of communicating and probably no way of ever being able to repay the debt of care.

Meeting the need for comfort, relief of symptoms and sometimes plain companionship at the end of life is both rewarding and exhausting, but remains one of the most satisfying and important tasks of a family doctor, palliative care physician and family member.

The journey of bereavement and grieving is also part of this process and it is in this stage of palliative care that the phrase "nothing more that can be done" has its final nemesis. There is always more to do. Support the bereaved, understand the losses, pay school fees for orphaned children, listen to the story again, encourage loneliness to develop into solitude – in silence.

This is a role that we all have in the lives of our community and families. The next stage of life is just that – life!

Dr Alan Barnard is a family doctor, palliative care physician and senior lecturer in the Division of Family Medicine at UCT. He recently led a three-lecture course on palliative care at UCT's annual Summer School. For more information, visit www.summerschool.uct.ac.za or call 021 650 2888.

This op-ed was originally published in the Cape Times on 20 January 2015.