Talking about dying: How to begin honest conversations about what lies ahead

Royal College of Physicians| October 2018 | Talking about dying: How to begin honest conversations about what lies ahead

A new report from the Royal College of Physicians (RCP) explores the reasons that doctors and other healthcare professionals find it hard to talk to patients about dying.

During their research, the RCP identified that the timely, honest conversations about their future that patients want are not happening. Yet, these proactive discussions are fundamental to effective clinical management plans, part of being a medical professional and align with the aspirations of the RCP’s Future Hospital Commission report.

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This report seeks to offer advice and support for any doctor on holding conversations with patients much earlier after the diagnosis of a progressive or terminal condition, including frailty.

Key recommendations:

  • Ask the patient if they would like to have the conversation and how much information they would want.
  • All healthcare professionals reviewing patients with chronic conditions, patients with more than one serious medical problem or terminal illness, should initiate shared decision making including advance care planning in line with patient preferences.
  • Conversations about the future can and should be initiated at any point. The conversation is a process not a tick-box, and does not have to reach a conclusion at one sitting.
  • Be aware of the language you use with patients and those they have identified as being important to them, and try to involve all the relevant people in agreement with the patient. (Source: Royal College of Physicians)

Talking about dying – full report

Read the press release from  Royal College of Physicians  Talking about dying: How to begin honest conversations about what lies ahead

In the media:

BBC News Doctors ‘need to start early conversation with patients about dying’

Survey reveals how NHS pressures put further strain on end of life care

A survey conducted by Marie Curie Care and the Nursing Standard demonstrates how pressures on the NHS are compromising care for terminally ill  patients. 

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It found that 94% of nurses who participated in the survey (n over 600) have witnessed dying patients ‘stranded’ in hospital as delays in funding have meant they were unable to receive care in the community.

Among the survey’s key findings were:

  • Almost two-thirds (65%) of nurses say they do not have sufficient time to provide high quality care for patients who are dying, a similar proportion to those who answered the survey last year.
  • Staffing levels (38%) and time constraints (25%) were the main barriers identified to providing high quality care, followed by a lack of care provision in the community, including care homes, peoples’ homes and hospices.

The full press release is available on the Marie Curie Care website 

The full results of the survey are published in latest issue of the Nursing Standard which is available to Rotherham NHS Staff here 

Deaths from dementia set to quadruple by 2040

The number of people who will die from dementia could almost quadruple over the next 20 years, suggests a study published in BMC Medicine | Story via OnMedica

hospital-bed-315869_1280Researchers analysed mortality statistics for England and Wales from 2006 to 2014 to estimate the prevalence of palliative care need in the population.

By using explicit assumptions about change in disease prevalence over time and official mortality forecasts, they modelled palliative care need up to 2040 as well as making projections for dementia, cancer and organ failure.

They calculated that by 2040, annual deaths in England and Wales could rise by at least 25.4% from 501,424 in 2014 to 628,659 in 2040.  If age and sex-specific percentages with palliative care needs remained the same as in 2014, the number of people requiring palliative care could grow by 25% from 375,398 to 469,305 people a year.

However, if the upward trend observed from 2006 to 2014 continued, they said, the increase could be as much as 47% more people needing palliative care by 2040 in England and Wales.

In addition, disease-specific projections showed that dementia (increasing from 59,199 to 219,409 deaths/year by 2040) and cancer (increase from 143,638 to 208,636 deaths by 2040) would be the main drivers of the growing need.

The authors concluded: ‘Our analysis indicates that palliative care need will grow far more over the next 25 years than previously expected’.

Full reference: Etkind, S. N et al. How many people will need palliative care in 2040? Past trends, future projections and implications for services. BMC Medicine 2017 15:102.

People who are dying should be asked about their spiritual beliefs

NICE has published new guidance calling on healthcare professionals to ask adults in the final days of life about their religious or spiritual beliefs.

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Cultural preferences and spiritual beliefs should be included in discussions about the care a person, and those close to them, want to receive, says NICE.

Knowing if someone holds a religious belief can be important for providing the care they desire. For example, someone who is Catholic may wish to receive the last prayers and ministrations.

The 2016 End of Life Care Audit reported nearly half of all deaths in England occurred in hospital. Spiritual wishes were only documented for one in 7 people who were able to communicate their desires.

Read the full overview here

Read the full guidance here

How well do we currently care for our dying patients in acute hospitals: the views of the bereaved relatives?

Mayland, C.R. et al. BMJ Supportive & Palliative Care. Published Online: 17 January 2017

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Background: The National Care of the Dying Audit—Hospitals (NCDAH) is used as a method to evaluate care for dying patients in England. An additional component to the 2013/2014 audit was the Local Survey of Bereaved Relatives Views using the ‘Care Of the Dying Evaluation’ (CODE) questionnaire.

Conclusions: Adopting a postbereavement survey to NCDAH appears to be feasible, acceptable and a valuable addition. On the whole, the majority of participants reported good or excellent care. A small but significant minority, however, perceived poor quality of patient care with clear and timely communication urgently needed.

Read the full abstract here

Treatment targeted at underlying disease versus palliative care in terminally ill patients

Reljic, T. et al. BMJ Open. 7:e014661

Objective: To assess the efficacy of active treatment targeted at underlying disease (TTD)/potentially curative treatments versus palliative care (PC) in improving overall survival (OS) in terminally ill patients.

Results: Initial search identified 8252 citations of which 10 RCTs (15 comparisons, 1549 patients) met inclusion criteria. All RCTs included patients with cancer. OS was reported in 7 RCTs (8 comparisons, 1158 patients). The pooled results showed no statistically significant difference in OS between TTD and PC (HR (95% CI) 0.85 (0.71 to 1.02)). The heterogeneity between pooled studies was high (I2=62.1%). Overall rates of adverse events were higher in the TTD arm.

Conclusions: Our systematic review of available RCTs in patients with terminal illness due to cancer shows that TTD compared with PC did not demonstrably impact OS and is associated with increased toxicity. The results provide assurance to physicians, patients and family that the patients’ survival will not be compromised by referral to hospice with focus on PC.

Read the full article here

End of life care for infants, children and young people

NICE has published new NICE guidance: End of life care for infants, children and young people with life-limiting conditions: planning and management (NG61).

This guideline covers the planning and management of end of life and palliative care in for infants, children and young people (aged 0–17 years) with life-limiting conditions. It aims to involve children, young people and their families in decisions about their care, and improve the support that is available to them throughout their lives.

Additional link: NICE news report