The art of diagnosing dying – including the family’s perspective

Dr Erna Haraldsdottir, Director of Education & Research/Senior Lecturer, St Columba’s Hospice / Queen Margaret University, Scotland, UK, explains the background to a longer article that is published in the November/December issue of the European Journal of Palliative Care.

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Dr Erna Haraldsdottir

When my father-in-law died in hospital at the age of 84 we, his family, were not surprised. Obviously, we were upset and sad but his death was not a shock to us. Diagnosed five years earlier with dementia and frailty, we had watched his gradual decline. He had been able to be at home, looked after by his blind wife who had support from their family and health and social care services. However, it came to a point where he was admitted to hospital. This was the result of his wife calling their general practitioner when one morning her husband was very unresponsive.

What drove me to write a small article for the European Journal of Palliative Care about our experience was how noticeable it was when assessing my father-in-law’s condition that a medical ‘snapshot’ picture, rather than holistic assessment, caused all sorts of confusion and additional stress for his family. Whilst initially believing that his condition was reversible, the healthcare staff were busy trying to discharge my father-in-law home as soon as possible when he was first admitted. However, later they were searching for the medical reason for his death. During this time we, the family, were preparing my father-in-law and ourselves for his death and trying to enable him to have a good death.

What did come as a shock to us was being contacted by the hospital and asked to come in after my father-in-law’s death, because issuing his death certificate appeared not to be a straightforward matter. After explaining to the medical doctor that we were not surprised by my father-in-law’s death, he felt he could issue a death certificate stating that dementia and frailty had caused the death. Before speaking to us the doctor was unsure about the cause of death as he told us that my father-in-law’s heart was fine, as were his lungs, and there was no urinary infection. Whilst relieved that the medical doctor took our account into consideration, I wished someone had done this earlier.

To me, our experience demonstrates how much my father-in-law’s death was medicalised. Diagnosing death is both an art and science; it is not just about the hard medical facts. A ‘snapshot’ picture caused the healthcare team confusion. By including the family’s perspective of what was happening and gathering information from the community health and social care services, the healthcare team could have gained a much better insight into my father-in-law’s disease trajectory and how advanced his disease was. In order to ‘diagnose dying’ for those who are elderly, frail and with dementia a holistic assessment is necessary, including the family’s perspective as well as information from the community health and social care services.

4_cover_2Read the full article in the European Journal of Palliative Care
This post relates to a longer article, ‘Diagnosing dying: Listen to the family’s perception!’, by Erna Haraldsdottir, published in the January/February 2016 issue of the European Journal of Palliative Care (vol. 23.1). If you have a web-based subscription to the journal you’ll be able to download this issue, plus all articles in the journal archive. You can also browse the archive and download articles by taking a 10-minute or 30-minute subscription. Members of the EAPC receive discounted subscription rates to the journal – click here to subscribe online.

 

The EJPC Palliative Care Policy Development Award 2016 – nominate someone now! Deadline for submissions: 31 March 2016
Do you know someone who has made a major contribution to palliative care policy development and think they deserve to have their contribution recognised by their peers? If so, the European Journal of Palliative Care would love to hear from you. To nominate, visit their website. The Palliative Care Policy Development Award 2016 will be presented at the 9th World Research Congress of the EAPC in Dublin, Ireland (9–11 June 2016) – Deadline for submissions: 31 March 2016.

This entry was posted in ADVOCACY & POLICY, EAPC-LINKED JOURNALS, European Journal of Palliative Care, PATIENT & FAMILY CARE and tagged , . Bookmark the permalink.

One Response to The art of diagnosing dying – including the family’s perspective

  1. Pingback: The art and science of diagnosing death - St Columba's Hospice

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