20 April 2022

12 tips for talking about death

Aged care Clinical Uncategorised


Our population is ageing. Australian research indicates that 27% of people in our acute health system have life-limiting illness, and between 50% and 70% will die within one and three years, respectively [1].

These patients often receive burdensome and potentially non-beneficial treatment that is not informed by an understanding of the patient’s values and preferences for care [2]. If we consider why this may occur, much of it stems from poor clinician communication and the ability of clinicians to initiate conversations they find difficult [3].

Person-centred care is recognised by the Australian Commission on Safety and Quality in Healthcare as a foundation to safe, high-quality care. It is based on principles of collaboration, respect, dignity, information sharing and participation.

In the context of life-limiting illness, there is often significant discordance about what the treating clinician knows and what the patient understands about their condition with serious consequences. Communication of accurate, relevant and timely information is essential for clarifying healthcare decisions and promoting the practice of shared decision-making.

Communication is a core non-technical skill but is often considered a “soft skill”, diminishing its very important role in the provision of safe, high-quality person-centred care.  We know many clinicians lack confidence discussing topics such as prognosis, advance care planning and end-of-life care and that clinicians do not always disclose bad news in an effective manner.

Opportunities for professional development to acquire these skills after medical school are limited, though some specialty groups such as general practice, oncology and palliative care have committed to providing opportunity during advanced training. Little opportunity is offered in the pre-vocational and post-specialty training space for experiential skills-based training and guided practice.

THE VOICE OF THE COMMUNITY IS ‘LOUD AND CLEAR’

The literature is clear about what our community wants, and it is remarkably similar across developed health systems. The community wants honest, clear information personalised to their situation that is conveyed with compassion, realism and hope.

Our patients want to understand all their treatment options, what their prognosis is, and to be prepared when approaching the end of their life[4]. They need clinicians to convey these messages in a way that is realistic, courageous and caring.  

Our community wants to understand much more about their illness than they currently do and to integrate this understanding with their ideas, concerns, values and hopes into their care goals and wider life decisions [5]. They want clinicians to listen and to discuss comfort, dignity, family and relationships, function or independence, and being prepared for what might be ahead [6].  

CAN COMMUNICATION SKILLS TRAINING CHANGE THIS?

Like all skills, communication skills can be taught and learnt, and these skills need to be taught with as much importance as any other clinical skill.

The literature would suggest there are very significant benefits for the community, the health workforce and the health system by investing in clinician training [7].

When clinicians are trained how to have difficult conversations, the conversations occur earlier in a patient’s illness, patients have less depression and anxiety, and they receive more goal-concordant care[7]. 

In addition, their goals of care are better documented, there are reduced costs to our health system and the clinicians feel less burnt out in their work[8]. If a pill were to have such benefits, it would be fast tracked through the TGA.

In the United States, 19 out of the top 20 performing health organisations have invested in training their workforces in evidence-based approaches to improve the quality of these tough conversations. Initiatives such as VitalTalk and Harvard Serious Illness programs have shown significant returns of investment with such training.

KEY STRATEGIES FOR EFFECTIVE COMMUNICATION

  1. Establish or re-establish the relationship
  • A skilled introduction includes your name, role and specific role in a patient’s care
  • Spend a few minutes building rapport to establish or re-establish the relationship
  • Pay attention to non-verbal communication such as posture, eye contact and changes in eye contact, and body movements

2. Identify the reason for the conversation, and negotiate the agenda items to discuss

  • Ask openly to identify what the important concerns are for the patient
  • Pause 3-5 seconds. This allows time and space for patients to raise difficult topics such as prognosis
  • Use screening questions (“What else would you like to cover?”) to ensure that all concerns are raised
  • Negotiate an agenda for the time available by sharing the items that you would like to cover, working with the patient to prioritise these
  • Share options to address the additional items outside the timeframe available

3. Listen with the intention to understand

  • Most patients share a lot of important information in the first 2-4 minutes – listen carefully with the intention to understand
    • Listen for what is not said and pay careful attention to non-verbal and verbal cues and “hints” given by the patient
    • Take care to not interrupt. The evidence is that clinicians still interrupt patients very quickly when they are sharing their perspectives

4. Check your understanding after gathering information

  • Clarify often, and invite correction
    • Summarise key points and pause to allow them to confirm, clarify and correct

5. Pay attention to information provision

  • The onus is on the clinician to provide information in a way that can be understood and remembered by the patient
    • Remember to “chunk and check” when providing information
    • Take care with pace, and pause often
    • Invite the patient to recap the information or directions provided to check your instructions were clear. Sharing this back aids patient recall

6. Attend to emotion

  • Acknowledge and address strong emotions. Helping with strong emotions increases the patient’s ability to perform cognitive tasks such as understanding choices or following treatment plans
  • Pay particular attention when discussing life-limiting illness

7. Explore in depth patient and family perception

  • “Persist with the P”, being perception. Frameworks such as SPIKES[9] and PREPARED [10] provide valuable guidance
  • Explore the patient’s sense of their illness, the reasons for investigations, ideas, concerns, hopes and fears in depth. There is often discordance between what the patient understands about their condition, and what the clinician does

8. When sharing difficult, unwanted or unexpected news

  • Prepare the patient that some difficult information is coming, using a short phrase and a significant pause.
  • Check that the time is appropriate to discuss the topic, and offer the support of a family member, friend or carer

9. Convey the information as simply and as clearly as possible

  • Avoid any ambiguity; do not use jargon
  • Don’t provide too much detail initially – most patients want to mostly listen, many will want to ask more questions, and some may feel overwhelmed and ask little else
  • Consider using the “best-, worsts and likely case” framework if it is prognostic information you are providing. This framework incorporates hope (best) while being realistic

10. Support the emotional response to the “news” before providing any more information

  • Explore the driver for emotions. This could be many things, such as uncertainty, prognostic implications or fear around death
    • Remember the phrase (adapted from Laura Rock) “Don’t respond to feelings with facts” or fixes initially

11. Empower patients and families to ask questions or share concerns

  • Consider linguistics
    • “What questions do you have?” infers you are seeking and expecting questions
    • “What is the most important thing for us to discuss now?” may assist the patient to prioritise if they are feeling overwhelmed

12. Clarify succinctly the key immediate next steps in their care

  • Provide support resources such as a key contact
  • Use “teach-back” to check recall given the huge impact on their cognitive capacity in response to the emotive arousal of such information

Peter Martin is a Professor of Clinical Communication & End-of-Life Care, Deakin University School of Medicine and the director of the Centre for Organisational Change in Person-Centred Healthcare (OCPH), Deakin University, Faculty of Health.

Peter has been involved with communication skills training for 25+ years and has been a clinician for over 30 years. His clinical interest is cancer cachexia. He has taught communication skills with Cambridge, Monash, Melbourne and Deakin medical schools. He has taught at numerous postgraduate courses with a variety of health professional disciplines nationally over the last 15+ years.

Since becoming the Director of OCPH he has developed and run numerous 1,2 or 3-day courses on healthcare communication including numerous train-the-trainer courses. The OCPH’s major intervention is an organisational level intervention to drive person-centred healthcare communication called Your Thoughts Matter.

Meg Chiswell is deputy director of the Centre for Organisational Change in Person-Centred Healthcare and Senior Lecturer, School of Medicine, Deakin.

References

1.         Milnes, S., et al., A prospective observational study of prevalence and outcomes of patients with Gold Standard Framework criteria in a tertiary regional Australian Hospital. BMJ Supportive & Palliative Care, 2019. 9(1): p. 92-99.

2.         Cardona-Morrell, M., et al., Non-beneficial treatments in hospital at the end of life: A systematic review on extent of the problem. International Journal for Quality in Health Care, 2016. 28(4): p. 456-469.

3.         Trankle, S.A., et al., Are We Making Progress on Communication with People Who Are Near the End of Life in the Australian Health System? A Thematic Analysis. Health Communication, 2020. 35(2): p. 158-167.

4.         Parker, S.M., et al., A Systematic Review of Prognostic/End-of-Life Communication with Adults in the Advanced Stages of a Life-Limiting Illness: Patient/Caregiver Preferences for the Content, Style, and Timing of Information. Journal of Pain and Symptom Management, 2007. 34(1): p. 81-93.

5.         Bernacki, R.E. and S.D. Block, Communication about serious illness care goals: a review and synthesis of best practices. JAMA internal medicine, 2014. 174(12): p. 1994-2003.

6.         Wyman, M.F., et al., “Hopes and wishes”: Goals of high-need, high-cost older patients and their caregivers. Patient Education and Counseling, 2020. 103(7): p. 1428-1434.

7.         Paladino, J., et al., Evaluating an Intervention to Improve Communication Between Oncology Clinicians and Patients With Life-Limiting Cancer: A Cluster Randomized Clinical Trial of the Serious Illness Care Program. JAMA Oncology, 2019. 5(6): p. 801-809.

8.         Messerotti, A., et al., Investigating the association between physicians self-efficacy regarding communication skills and risk of “burnout”. Health and Quality of Life Outcomes, 2020. 18(1).

9.         Baile, W.F., et al., SPIKES—A Six?Step Protocol for Delivering Bad News: Application to the Patient with Cancer. Oncologist, 2000. 5(4): p. 302-311.

10.       Clayton, J.M., Advance Care Planning discussions in Australia: the development of clinical practice guidelines. 2010, Oxford: Oxford University Press.