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Set a low bar for starting palliative care

BMJ 2016; 353 doi: https://doi.org/10.1136/bmj.i3598 (Published 30 June 2016) Cite this as: BMJ 2016;353:i3598
  1. Scott A Murray, St Columba’s Hospice chair of primary palliative care
  1. Primary Palliative Care Research Group, Centre for Population Health Sciences, Usher Institute of Population Health Sciences and Informatics, University of Edinburgh, Edinburgh, EH8 9AG
  1. Scott.Murray{at}ed.ac.uk

Dying patients and their families most need support early on

About two years ago, death tapped me on the shoulder. I’d been coughing on and off for a year but didn’t want to think about a danse macabre.1 Eventually I went to my GP. The x ray report could not be ignored. Neither could the computed tomography scan, which confirmed lung cancer.

Tough luck, I thought, because I’ve never smoked. And, how ironic: I teach palliative care to medical students and routinely ask them what they’d wish to die from. The smart choice is cancer, because end of life services are much better developed for that. I’d also led the Making a Difference campaign in TheBMJ to extend palliative care to all conditions.2 But now cancer was fighting back in a rather underhand way.

Discussions, tests, questions, and decisions came quickly while I tried to work and make sense of things. The surgeon suggested a lobectomy and clearance of nodes, and my wife encouraged him to take enough out. I got a sick note and succumbed to treatment.

Arriving at the diagnosis was a particularly stressful time. But I’d been forewarned: our research team at Edinburgh had been interviewing people with lung cancer,3 glioma,4 and bowel cancer,5 at the time of diagnosis and again later, along with their families.

Most traumatic

Most patients found the times before treatment or diagnosis more stressful than any other. As patients looked back just before they died or as bereaved relatives reflected afterwards, they often reported the time around diagnosis as the most traumatic. Psychological and existential distress seem most acute at diagnosis, at the return home after initial treatment, at recurrence, and around the time of dying—and the early stage is often the worst of all.6 Family members also went through a similar helter-skelter of emotions starting at that time.7 So, people arriving at a diagnosis of life threatening cancer need early psychological and existential support.

Psychological and existential distress seems most acute at diagnosis, and the early stage is often the worst of all

When death tapped me on the shoulder I benefited from a palliative care approach from generalist clinicians. This meant easy access and friendly support on the telephone, without anyone mentioning the phrase “palliative care.”8 After 18 months my GP removed the electronic tag on my record that indicated a palliative care approach. I was no longer on the palliative care register. I felt relieved, but that harks back to an association with dying. Palliative care should be for everyone who needs it, when they need it; and earlier is better than later, when relationships can be built and when there’s time to think and plan and to enjoy the remaining life to the full.

Clear clinical implications

Acknowledge to patients facing a brush with death that they will find this initial time very challenging but that you will help them and be there for them. Explain the ups and downs that affect most patients with their condition (and family carers), and invite them to make regular contact with someone for support.

In other words, trigger a palliative care approach, but don’t necessarily use the phrase. After all, we don’t have to use the word “gastrectomy” to explain that operation to a patient. In Scotland we now use the term “anticipatory care” to describe care planning in primary care with daily routine electronic communication of a key information summary to all other care settings.9

Most people in Scotland die with a care plan in place. Let’s be ready to offer care planning when a life threatening illness strikes. Waiting for death misses the point.

Footnotes

  • Competing interests: I have read and understood BMJ policy on declaration of interests and have no relevant interests to declare.

  • Provenance and peer review: Not commissioned; not externally peer reviewed.

References

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