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Communication at End of Life - Synthesis

Introduction

The importance of good communication in the end-of-life phase has long been recognised by health care providers and has been shown to improve the person with a life-limiting illness and families understanding, enhance therapeutic relationships, facilitate access to appropriate services, increase compliance with treatment, and improve overall quality of life for the older adult. [1,2] Research suggests most but not all older adults would like the opportunity to discuss their end-of-life needs, however these discussions can vary in both timing and content. [3,4]

Quality Statement

Twelve systematic reviews were included. Of this total, four systematic reviews predominantly focused on palliative care of older adults in community, acute or aged care settings. [3-6] Each of the reviews focused on end-of-life (EoL) communication for older adults either without a definitive diagnosis or prognosis [3,4,6] or where a diagnosis, such as chronic heart failure, makes a clear prognosis hard to predict. [5]

A further nine reviews [1,2,7-13] primarily focused on palliative care and communication in adults, not specifically older adults or in an aged care setting. These provide additional context to the synthesis. [1,4,8,12,13]

Evidence Synthesis

Two systematic reviews [3,4] discussed whether end-of-life discussions are being held. A review by Sharp et al. [4] found that <29% of frail older adults were engaging in discussion around end-of-life planning with a care professional. Similarly, the review by Barclay et al. [3] suggested that the majority of people do not perceive they have discussed end-of-life care with their healthcare professionals. 

Despite these low numbers, the review found that 61-91% older adults wanted to discuss their end-of-life care not wanting to ‘leave it too late’. [4] Adults 50yrs and over were less likely to wish to engage in discussions believing they could wait until they were older or in poorer health. [4] This is at conflict with findings from de Graaff et al. [9] who found the younger adults were more inclined to seek out information than their older peers. 

The systematic review by Garland et al. [5] also found that older adults were less likely to ask questions and often deferred decision-making while also waiting for health care professionals to raise the end-of-life discussion. Whereas many people in the studies wished to have information regarding their condition, not all people wanted full disclosure and in particular wished to avoid prognostic information. [5]

In the review by Sharp et al., [4] four papers noted that 91-97% health professionals identified the importance of end-of-life discussion and care planning for adults but less than 64% recognised the importance for these conversations with older adults, particularly for those without a clear terminal prognosis. It is proposed that discussion is more likely to occur with older adults diagnosed with a malignancy, where the dying trajectory seems clearer than for those with non-cancer life-limiting illnesses. [13] Another concern raised by doctors was that initiating discussion with older adults may damage the hope that this cohort bring to the patient-doctor relationship. [4,5] The literature reports the fear that patients and physicians have that end-of-life conversations can limit or destroy hope or damage relationships but it is unclear if this is the case. [3,4]

The review by Walczak et al. [2] focussed its attention on interventions aimed at improving end-of-life communication and education. Findings in this review indicate research with stronger methodology is needed for it to be clear what works best and for whom. This review provided evidence that end-of-life communication, for older people, is linked to more comfort with end-of-life planning and greater action in decision-making and documentation of decisions. [2] This review also highlighted the challenge of communicating with family and carers as their need for and readiness for information may be different to that of the person receiving palliative care. [2]

Barriers to timely communication

Barriers to initiating end-of-life discussions are proposed by Sharp et al. [4] Some families are often reluctant to accept that their relative is near the end of life or feel protective and do not wanting to engage in upsetting conversations. Similarly, the person may be reluctant to engage in discussions, preferring to leave decisions to their family or medical team. [4,5] In the case of dementia these discussions do not often occur before a person has reduced decision-making capacity. In these instances, due to the person’s reduced understanding and decision-making capacity, many health professionals consider discussions with the person to be unwarranted. [6] Inadequate understanding of a condition can mean that people are unaware of likely complications or trajectory of the disease. Educating the person and their families and linking them in with resources for self-education can encourage discussion of end-of-life management and generate questions. [3] It is important to recognise that not all doctors are confident in their communication skills when discussing these topics and often resort to euphemisms or excessive use of medical jargon, which can mean the nature of what is discussed is not explicit or well understood. [5]

Health professionals are concerned they do not have adequate time to have such conversations [4,5] and may even assume other health professionals have had necessary conversations regarding the end of a person’s life. [5] Health professionals also cited the uncertainty of diagnosis and prognosis as a barrier to timely conversations. [13] This was particularly highlighted in reviews by Stephen et al. [13] and Garland et al. [5] who recognised that the fluctuating trajectories of non-malignant diseases made it challenging to recognise when end-of-life discussions were needed. Death anxiety experienced by health professionals has been shown to affect EoL discussions, however there is insufficient evidence to conclude discussions are postponed or avoided. [10] 

Fear of causing distress to the person and their family is also cited as a barrier to initiating discussion around end of life, with concern that hope is removed from the patient-health professional relationship. The systematic review by Stephen et al. [13] notes a randomised controlled trial (RCT) whereby an active end-of-life intervention resulted in improved functional status, preparation for end of life and reduced anxiety and depression. This is further dispelled as a misplaced concern, as several studies cite themes of most people preferring to have the discussions rather than information being withheld. [1,13]

Timing of end-of-life discussions

Conflicting information exists around when the best time for end-of-life discussions should take place. Waiting for the person to initiate conversations is often preferred by clinicians but it is reported that people rarely initiate such topics. [2,3,5]

In the paper by Garland et al., [5] studies found that the persons’ understanding of their condition or disease influenced how early EoL conversations were initiated.  People with an understanding of the life-limiting nature of their condition were more likely to want to put affairs in order early in the disease process. [5] Limited studies have been conducted on when the best time to discuss end-of-life options is. However, one high quality systematic review on people with advanced cancer found significant associations between EoL discussions that occurred before the last 30 days of life and a likelihood of less aggressive care at EoL. [12] In addition, people receiving palliative care were also less likely to have new chemotherapy treatment within 60 days of death. [12] Despite this, the literature suggests discussions are more likely to occur when a person is unwell and in hospital which is the least likely time when information can be processed. [2-4] Under these circumstances, it is important that a health professional initiates the conversation early in the hospital stay [12] and these conversations continue with the person’s interactions with various healthcare professionals in the health system. [2,3]

Content of end-of-life discussions

In the systematic review by Stephen et al., [13] the style and content of end-of-life discussions was deemed as one of three key themes determined from 14 qualitative and quantitative studies. Successful discussions were those where people felt listened to and where questions were encouraged. Noted was a split in consensus regarding disclosure of the uncertainty of prognosis, [5,13] and whether discussion should include the withdrawal of aggressive life-sustaining treatments [5] and information on the changes the person might expect in daily living. [13]

Overcoming cultural or language barriers

Consideration of multicultural contexts of palliative care is an important facet of end-of-life care. [9] In the systematic review by de Graaff et al., [9] 37 of the 57 studies looked at communication in end-of-life care in Turkish and Moroccan immigrants in the Netherlands. Five themes emerged: communication of diagnosis and prognosis; communication about pain, sorrow and mental health problems; language barriers; and communication patterns within the family. Certain cultural backgrounds may preclude the person receiving information prior to the family, [8] However, de Graaff et al. [9] found prognosis or diagnosis was not discussed with the person  up to 63% of the time, mainly due to the doctor or family not wanting to distress the person. These sentiments are similar to those expressed in reviews by Murray et al. [1] and Stephen et al. [13] A higher socio-economic status and education level, or the type of illness i.e. terminal malignancy, increased the likelihood of these discussions. [9] These older adults were less likely to want information on their disease whereas younger adults were more likely to ask questions and encourage discussions. In addition, the relatives did not like the direct nature of delivery of these discussions from the Dutch care providers. Where differences in culture and religious beliefs about end of life practices occurred between the clinician, the person and their family, impaired communication around prognosis and EoL plans was identified. [7] Cultural values and beliefs are to be included in end-of-life decisions. De Graaff et al. [9] found that Turkish people were unlikely to complain about pain and did not want to discuss psychological symptoms such as depression or dementia. Brooks et al. [7] also noted that patients and families from different cultures may express pain and grief in different ways, and many clinicians are unsure as to how best to engage with appropriate cultural understanding and sensitivity.

Interpreters may not always be available. Relatives acting as interpreters may cloud decision-making, particularly if young children take this role. [9,11] A recent systematic review by Silva et al. [11] discussed a significant improvement in quality of care when a professional translator was used for people at end of life with malignancy. Less errors and improved understanding were noted for both parties. This study also raises the need for professional translators to receive some support and education around delivery of end-of-life information and emotionally charged discussion as many felt uncomfortable relaying sensitive information. However, insufficient evidence was found for the effectiveness of using interpreters for EoL discussions in the intensive care unit. [7,11]

Summary

The majority of older adults are open to discussion around end-of-life and want to know what to expect as their health deteriorates. They may need to have these discussions with a person they trust and feel comfortable with and perhaps seek these discussions over more than one occasion. Health professionals may lack confidence in initiating end-of-life discussions particularly where prognosis is not known, for fear of distressing the person and their relatives. People at a social disadvantage may be less likely to want to engage in end-of-life discussions. If needed, a neutral interpreter is recommended where possible. Conversations in all scenarios, should take place with ample time to invite questions, and the opportunity to summarise what was understood. Regular follow-up meetings are recommended as the health status changes, as terminal phase begins and if treatment is to be discontinued.

Evidence Gaps

  • The effective ways of encouraging dialogue and choice particularly for frail and older people within the context of the current healthcare systems and personal circumstances.
  • The optimal timing for the initiation and continuation of end-of-life conversations particularly for conditions where prognosis is uncertain
  • The relationships between these end-of-life discussions, healthcare utilisation, and costs
  • The effectiveness and cost-effectiveness of broad-based resourcing of end-of-life focussed communication interventions
  • The effect of family meetings on patient, family, clinician, and health service outcomes
  • The effectiveness of online opportunities for carers to discuss care issues with health professionals
  • Whether initiating end-of-life discussions affect or destroy hope or destroy clinician-patient relationships
  • How to improve the communication of the diagnosis of dementia to optimise the person’s quality of life and their ability to participate in discussions and express their preferences and wishes (spoken or documented) while they are still able.
  • Whether physicians with a high fear of death (death anxiety) avoid and/or postpone communication with patients about death and dying
  • The impact of professional interpreters on improving goals of care discussions, symptom management, and emotional support for patients with limited English proficiency and their families
  • There is a lack of evidence pertaining to differences in racial and ethnic communication at EoL in the ICU unit and the impact on the person’s care.

Page updated 17 June 2021

  • References

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