Marina Malthouse, Retired palliative care physician

Published in JHH 18.3-Shifting the paradigm

How a person dies is unique to that person. Whatever their social background and culture, dying involves losing both body and ‘soul’ (or whatever we choose to call our intangible sense of self). In this sense the care of someone who is dying needs to be holistic, aiming for a good and peaceful death. Yet we must avoid idealising a peaceful death, for not all deaths can be ‘good deaths’: dying can sometimes be ugly and may seem totally without meaning.

The practice of ‘modern medicine’ is too often preoccupied with actively managing patients already in poor health with multiple co-morbidities, or with treating acute episodes of their end-stage diseases. It all too easily overlooks (or might even be shamed by) the fact that a patient is actually dying. Diagnosing dying can be difficult, but when and if it is recognised in good time, this will allow the dying person and their families to prepare themselves for death and loss. Doctors therefore need to learn about how to recognise when a person is nearing their end and to hold back their striving to save life with inappropriate, active medical management.

Although it is important to avoid unnecessary investigation and treatment, there will be times when intervening medically can mercifully improve a dying patient’s symptoms: for instance by correcting hypercalcaemia, or inserting stents to reduce unrelenting vomiting caused by malignancy or giving radiotherapy to relieve malignant bone pain. Open discussions with patients and their families in this situation should always give a clear message that the clinical intention is not to cure, but to alleviate symptoms and reduce suffering.

When a person is dying and cannot be cured, it is possible for healing to occur if healthcare professionals both grasp and value this concept and make it a goal of their care. Modern medicine aims to treat and cure an identified disease, or at least to manage it and alleviate its symptoms. Dying, though, is not a disease that can be cured nor comfortably situated within a model of medicine whose language revolves around diagnosis and treatment. In these terms healing is impossible to define because it presupposes a ‘wholeness’ which is more than physical and that integrity can be restored. Or perhaps a new, different, better wholeness may be possible even as a body and mind are closing down. Such healings, which are far from rare events in end-of-life care, tell of a mysterious integrative process, of a grace which though it may not bring physical relief, can still enhance mental, emotional, and spiritual wellness.

‘Dying is not a disease that can be …comfortably situated within a model of medicine whose language revolves around diagnosis and treatment’

For healthcare practitioners, it feels very obvious to say that how we understand and relate to dying inevitably influences how we engage with and care for someone who is suffering or afraid of dying. Although each individual practitioner’s role is important, the team and the larger system we work in can both facilitate and impede great care and healing. The physical space of care can also contribute to or hinder healing, as can the team’s shared values and the sense of safety and care represented in the physical and social environment.

A practitioner who is open to the possibility of healing will emphasise the human-to-human encounter, but keep professional clinical humility at its core. Therapeutic practitioners who understand the concept of healing and its processes seek out the particularities of each dying person being cared for. They will appreciate the importance of holding an attitude of curiosity and inquiry and understand how the healing journey can also be helped along by art, poetry, music and touch and by skilled complementary therapists. They do not make assumptions about a patient, their needs and their situation. They ask about the patient’s relational web and how to engage with it so that their support network can be optimised. After all, in the past, most care of the dying was in people’s own homes. As most deaths now occur within formal healthcare settings, dying is less of a community responsibility and people in general lack confidence, knowledge and the skills to fulfil these roles. However, care for the dying can be rebuilt into communities by pursuing Alan Kellehear’s idea of compassionate communities (www.compassionate-communitiesuk.co.uk/who-we-are).

‘A new, different and better wholeness may be possible even as a body and mind are closing down’

Professional support (eg by a palliative care multi-disciplinary team) should be consistent wherever possible, no matter what gets in the way of this standard. This helps to build trust throughout the dying period so that ultimately no one feels alone (physically, socially and metaphorically) whether at home in the community, in hospital or hospice.

As death approaches, people can feel especially vulnerable. Struck acutely by this reality, a multitude of other losses may surface, and these reverberations need to be recognised and accepted by professionals. If we are to prepare ourselves to be alongside a patient who is expressing their suffering (and be open to other, not always negative, lived experiences around dying), we must acknowledge our fundamentally shared human vulnerability. Humanising dying requires professionals to consider themselves to be as human and potentially as dependent (when our own time comes) as the dying human being in front of us. This is no easy task for individuals, nor for educators aiming to help us understand the importance of growing into this particular compassionate way of being. Perhaps the key is in learning to tolerate distress and uncertainty, to listen attentively and to respond to the dying with confidence without always reaching for solutions.

Humanising care for the dying asks that we respond to patients’ needs with kindness and compassion. The education of healthcare professionals who do this difficult and demanding work should focus not just on intellectual and technical abilities but inspire their moral imagination as well. Moral imagination involves not only the ability to generate useful ideas, but also the ability to form ideas about what is good and right, and to put the best ideas into action for the service of others (Narvaez & Mrkva, 2014).

To care for dying patients holistically is to aim high. Education at every level is essential and once qualified as practitioners, our ongoing learning depends on being helped to share stories of good practice (what went well), and to learn from mistakes (what didn’t go well) so that future care can be improved. However, only when medical organisations and the environments and cultures they create genuinely value the humanity of their healthcare workers and treat them with respect and support them in their efforts, will everyone involved find satisfaction, meaning and reward in providing humanising care for the dying.

Reference

Narvaez D & Mrkva K (2014) The development of moral imagination. In: S Moran S, D Cropley D, & JC Kaufman (eds) The ethics of creativity. Palgrave Macmillan..