Let’s talk about dyingBMJ 2011; 342 doi: https://doi.org/10.1136/bmj.d3018 (Published 17 May 2011) Cite this as: BMJ 2011;342:d3018
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I have been teaching medical students about end of life care. These are third year students and had previously received no formal or informal teaching on palliative care, the Liverpool Care Pathway and DNAR decisions.
I was aware that students have their own experiences of death and their own reflections on how it can be managed but was surprised by how difficult some of them found the concept of applying the LCP and its implications. They really pushed me to persuade them how it differs from euthanasia and how it is not ‘giving up’ on a patient. Two of them have been HCAs and were very comfortable with the concept having seen its effective application on a number of occasions. Those who had not experienced death or had lost well young friends or relatives suddenly really struggled not to think of it as actively killing the patient.
Having literally walked onto the ward on my first day as a doctor and being given my first job to certify a patient, I went on to experience the frail, drawn-out deaths of very many patients within my first few months on elderly care. These experiences really made me appreciate the absolute importance of the LCP and how very valuable it is. I 100% feel it is the best course of action in so many cases and is essential in the management and right decision in so many. I attempted to explain this to the students and impress upon them that it is a very positive step in ensuring comfort, dignity, peace and allowing autonomy to the nursing staff at this deeply important time.
Until then, the students’ learning had been focused on being ‘Superheroes’ and how to save lives at all costs. To me it is more heroic to make the tough decisions such as these and do the right, yet difficult thing for these patients at the end of their lives. Making the end of someone's life as comfortable and dignified as possible is far more important than preserving life at all costs.
I hope that introducing these concepts early in their training will help them to become more comfortable with managing death and dying. I finished the session feeling I had shattered their dreams of being the hero doctors portrayed on television, but felt honoured to guide them through their first discussion of this essential aspect of medicine.
Competing interests: No competing interests
We agree with Dr Lakhani's assessment that people with advanced
progressive disease who are admitted to hospital are not always identified
as being at the end of life and in need of palliative care.
Marie Curie in partnership with St Mungo's, a charity working with
homeless people, recently undertook work to try to improve care for
homeless people around the time that they were dying. The work was funded
by a 3 year grant from the Department of Health (http://www.mariecurie.org.uk/Documents/HEALTHCARE-PROFESSIONALS/Innovati...).
Advanced liver disease was identified as one of the most common
conditions amongst hostel residents that existed with other co-morbidities
in conjunction with substance abuse. Residents had multiple physical
symptoms in the last 6 months of life alongside psychological distress.
Admissions to hospital were frequent and lengthy and a number of sudden
deaths occurred in hospital and hostels. The average age was 55 years.
Despite increasing admissions to secondary care in the last 6 months
of life for management of acute episodes lasting an average of 18 days, no
evidence was found of any referrals to palliative care.
Communication between secondary care and hostel staff was limited due
to issues of disclosure, despite some residents regarding hostel staff as
their next of kin in the absence of family or alternative supportive
networks. This lack of sharing of information meant that hostel staff
were often ill informed or unaware of the severity of a resident's medical
condition when they were discharged from hospital.
Consequently staff working with residents in hostels found
difficulties linking the signs and behaviours associated with advanced
liver disease with possibilities for palliative care interventions such as
exploring choices, future needs and wishes, or agreeing a suitable plan
for care. This also prevented opportunities for residents to reconnect
with estranged family members.
Symptoms at the end of life were frequently distressing for residents
with the majority dying in hospital, an environment that they had
previously resisted and in which many did not feel comfortable.
Deaths that occurred suddenly had not usually been anticipated and were
therefore perceived to be unexpected. This resulted in some distress to
other residents and staff as well as to family members that were still in
contact - no one was prepared.
People who are homeless have a right to be informed about their medical
condition and prognosis and offered a chance to express their wishes for
care at the end of life.
Recommendations following this work include training for hostel staff
in palliative care issues to enable them to recognise and therefore act on
key signs and symptoms and offer psychological support as a resident's
condition deteriorates. The palliative care coordinator at St Mungo's has started to involve staff
in end of life care training and encouraged them to adopt an advocacy role
on behalf of residents when interacting with health professionals and
planning services. Improvements in communication between hostel staff and health
professionals are necessary to provide residents with the relevant
information to facilitate discussions about the choices available to them
for care. Communication materials have also been developed in partnership
with the National Council for Palliative Care as part of their Dying
Matters series to help people who are homeless inform others of what
matters to them as they approach the end of life, and for hostel staff and
healthcare professional when initiating conversations about their end of
life care (http://www.dyingmatters.org/page/homeless-people).
Future in-depth qualitative work with hostel residents will help us
to explore their wishes and needs for care at the end of life and will
provide information on the environment and services they find most
Sarah Davis is a Research Associate at the Marie Curie
Palliative Care Research Unit, UCL firstname.lastname@example.org
Peter Kennedy is the Palliative Care Coordinator at St Mungo's.
Wendy Greenish is a project manager at Marie Curie Cancer Care.
Dr Louise Jones is Head of the Marie Curie Palliative Care Research Unit,
UCL and Acting Head of research at Marie Curie Cancer Care.
2. My Life, my choices and Talking about end of life choices with people
that are homeless 2011.
Competing interests: No competing interests
We agree with Dr Lakhani that talking about dying is difficult for
doctors. We would add that predicting death is very difficult and often
doctors need to 'parallel plan' for the possibility of death or recovery.
In the field of paediatrics we are approaching this problem by
promoting the concept that every child or young person with a long term
health condition, particularly those with severe disability should have a
family held Emergency Health Care Plan (EHCP) which includes details of
what to do if the child is unwell and a clear plan regarding appropriate
levels of resuscitation and life support i.e. a personal resuscitation
An EHCP with resuscitation plan is a positive plan about getting
useful treatment promptly, however the making and regular reviewing of
this plan by the paediatrician together with the child or young person and
the family is a much easier way to start talking about how the condition
is progressing, the best emergency care, but also the risk of dying and
best choice of care in that event.
Templates for EHCPs1,2 and PRPs3 have been piloted and published and
guidance for paediatricians on their implementation is being developed in
partnership with the Council for Disabled Children.
Most children and young people with long term conditions have a lead
paediatrician who takes responsibility for their overall medical care plan
including the EHCP and discussions about prognosis and end of life care.
In adult medicine there may not be such clarity regarding who is the
patient's lead physician, but this is an essential coordinating role and
it would make sense for it to be undertaken by the GP. Also, increasing
numbers of young people will graduate to adult services with an EHCP in
place and it is essential for the paediatrician to 'hand on the baton' for
health care coordination, including keeping the EHCP up to date, so that
this continues to reflect the individual's best interests and be a useful
communication tool in the event of a health care emergency. In many cases,
the general practitioner will be best placed to take up this role, as the
health worker with the closest knowledge of the individual and their
Toni Wolff, disability paediatrician, Child Development Centre, City
Hospital. Nottingham.UK email@example.com
Karen Horridge, disability paediatrician, Sunderland Royal Hospital.
Amanda Allard, Principal Officer, Council for Disabled Children, 8
Wakley St, London EC1V 7QE, UK.
1. User views of Emergency Health Care Plans for disabled children
and young people. Jones N, Fetherston A, Horridge K. Dev Med Child Neurol
2. Assessment and investigation of the child with disordered
development. Horridge KA. Arch Dis Child Educ Pract Ed 2011;96:9-20
3. Personal resuscitation plans and end of life planning for children
with disability and life-limiting/life-threatening conditions. Wolff A,
Browne J and Whitehouse WP. Arch Dis Child Educ Pract Ed 2011;96:42-48
Competing interests: No competing interests