Table 31, Summary of studies included in the review - Care of Dying Adults in the Last Days of Life

Study	Design	Population	Research aim	Comments
From family and patient perspectives
Abbott 2001³	Semi-structured interviews	n=48 family members of critically ill people for whom the issue of withdrawing or withholding life-sustaining treatment was discussed in 1 of 6 intensive care units (ICU) USA.	To identify critical psychosocial support and areas of conflict for families of people in an intensive care unit during decisions to withdraw or withhold life sustaining treatment.	The participants were interviewed between 18-22 months after the experience, potentially affecting the validly of the experiences and opinions reported.
Almack 2012⁶	Semi-structured interviews	n=18 people They each nominated a family carer/relative (11) and a healthcare professional (15) that were involved with their care at home to also be interviewed. UK	To explore the factors influencing if, when, and how advance care planning (ACP) takes place between healthcare professionals, patients and family members from the perspectives of all people involved and how such preferences are discussed and are recorded.	People included had diagnoses ranging from cancer to cardiovascular diseases.
Caron 2005¹⁹	Interviews	n=24 care givers Canada	To examine the experiences and preoccupations of family caregivers about end-of-life issues, and more specifically, about treatment decision-making processes in the context of advanced dementia.	Not all included participants had experience in decision-making in last days of life.
Hsieh 2006⁴³	Clinician-family conferences	n=51 Intensive care units Seattle.	To identify inherent tensions that arose during family conferences in the intensive care unit and the communication strategies clinicians used in response.	The interviews were undertaken by clinicians known to the family.
Lind 2011⁵⁹	Interviews	n=27 bereaved family members of 21 former ICU patients 3-12 months after the patient's death. ICU setting. Norway	To examine family members' experiences of end-of-life decision-making processes in Norwegian intensive care units to ascertain the degree to which they felt included in the decision-making process and whether they received necessary information.	The interviews were held on average 9 months post death of the relative introducing recall bias.
Lind 2013 ⁶⁰	Interviews	n=11 family members of 6 former ITU patients, that were awake and had assumed competence to make decisions. Norway	To explore to what extent and in what ways can family members of alert and assumed competent people be involved in information and decision-making processes regarding possible termination of treatment.	This was a subset of the population of the Lind 2011⁵⁹
Nolan 2008⁸¹	Semi-structured interviews and survey/descripti ve data.	n=16 people recently (within 8 weeks) diagnosed with ALS and 16 matched family members they felt might participate in healthcare decisions with them. USA	To compare the preferences of people with amyotrophic lateral sclerosis (who normally maintain capacity for decision making until close to death) for involving family in healthcare decisions at the end of life with the actual involvement reported by the family after death.	The people were followed every 3 months up to death, and the family members post death.
Royak-Schaler 2006⁸⁴	Focus group discussions.	n=24 spouses and first degree relatives of deceased people with cancer. USA	To assess healthcare provider communication about end-of-life and hospice care with people with terminal cancer and their families, from the perspective of family members.	The educational back ground of the participants was higher than that of the general population which may limit generalizability.
Tilden 1995⁹⁷	Semi-structured interview.	n=44 Tertiary hospital in a major university medical centre and level I trauma centre. USA	To describe how families reason about a decision to withdraw life support. To describe the positive and negative effects of physicians' and nurses' behaviours on families during the process.	Participants were selected from intensive care settings.
Vig 2007 ¹⁰⁰	Semi structured telephone interviews.	n=50 surrogate decision makers of older, chronically ill, veteran people USA	To gain an understanding of the experience and challenges of surrogate decision making.	Only 76% of the included population had made end of life decisions.
From healthcare professionals prospective
Addicott 2012⁵	Interviews	n=141 NHS and other service providers UK	To identify what particular barriers exist for people with non-cancer conditions in accessing end of life care support.	Poor description of methodology, and difficult to establish whether direct to end of life decisions in the last days of life, or in a wider time frame.
Boot 2014¹⁰	Semi-structured interviews	n=12 community-based clinical nurse specialists from 2 teams, 1 based in a more rural and 1 based in an urban area. UK	To identify the challenges experienced by clinical nurse specialists when facilitating advance care planning conversations.	Methods are described in insufficient detail (for example, interview questions/prompts not provided) and only 1 researcher seems to have coded the transcripts.
Fields 2013³⁵	Semi-structured interviews	n=6 hospice clinicians from a Marie Curie Hospice which provides specialist palliative care services. UK	To explore clinicians' experiences of discussing preferred place of death with people receiving palliative care.	This study is restricted to decisions about preferred place of death. But, the extracted themes are generalisable to the overall topic of shared decision making.
Minto 2011⁶⁸	Semi-structured interviews.	n=6 One GP and 1 district nurse from each of 3 GP practices. UK	To determine the factors that assist or hinder the primary care health professionals having discussions about the end of life.	The interviews were undertaken by clinicians known to the family.
Seymour 2010⁸⁷	Focus group discussions.	n=23 community nurses from 2 Cancer Networks UK	To examine how community palliative care nurses in England understand ACP and their roles within ACP To identify factors that may facilitate or constrain community nurses' implementation of ACP and nurses' educational needs.	Nurses who participated were self-selecting and therefore likely had a particular interest in the topic.
Stevens 2011⁸⁹	Focus group discussions.	n=34 healthcare professionals. UK	To investigate the views of healthcare professionals regarding ACP.	Included non-cancer conditions such as COPD.
Tan 2013 ⁹⁴	Semi-structured interviews.	n=11 family physicians with experience of dealing with conflict with surrogate decision makers of dying people. Canada	To describe the conflict experience that family physicians have with substitute decision makers of dying people and to identify the factors that may facilitate or hinder the end of life decision making process.	The study only explores physicians who had experience of dealing with conflict, and did not speak to those who reported no conflict, this group may have had refined skills in preventing or handling conflict.
Thompson 2003 ⁹⁶	Semi-structured interviews and focus groups.	n=12 interviews (4 hospital doctors, 4 GPs and 4 nurses); 6 focus groups (hospital nurses, hospice staff, GPs, consultant geriatricians, geriatricians in training and an interdisciplinary group, n=34) UK	To discover the views of health professionals on advance directives.	This study is indirect evidence since advance directives are not the focus of the review question. However, 1 theme relates directly to the directive having a facilitating effect for discussions of other areas of end-of-life decision making. It is therefore included.
Willard 2006¹⁰⁸	Observation and semi-structured interviews.	n=29 cancer nurse specialists from 5 hospital trusts. UK	To discuss the challenges to appropriate EOL care in acute hospitals in the UK, highlighting how this setting contributes to the patients' and families' care and treatment requirements being excluded from decision-making.

Study

Design

Population

Research aim

Comments

From family and patient perspectives

Abbott 2001³

Semi-structured interviews

n=48 family members of critically ill people for whom the issue of withdrawing or withholding life-sustaining treatment was discussed in 1 of 6 intensive care units (ICU)
USA.

To identify critical psychosocial support and areas of conflict for families of people in an intensive care unit during decisions to withdraw or withhold life sustaining treatment.

The participants were interviewed between 18-22 months after the experience, potentially affecting the validly of the experiences and opinions reported.

Almack 2012⁶

Semi-structured interviews

n=18 people They each nominated a family carer/relative (11) and a healthcare professional (15) that were involved with their care at home to also be interviewed.
UK

To explore the factors influencing if, when, and how advance care planning (ACP) takes place between healthcare professionals, patients and family members from the perspectives of all people involved and how such preferences are discussed and are recorded.

People included had diagnoses ranging from cancer to cardiovascular diseases.

Caron 2005¹⁹

Interviews

n=24 care givers
Canada

To examine the experiences and preoccupations of family caregivers about end-of-life issues, and more specifically, about treatment decision-making processes in the context of advanced dementia.

Not all included participants had experience in decision-making in last days of life.

Hsieh 2006⁴³

Clinician-family conferences

n=51 Intensive care units

Seattle.

To identify inherent tensions that arose during family conferences in the intensive care unit and the communication strategies clinicians used in response.

The interviews were undertaken by clinicians known to the family.

Lind 2011⁵⁹

Interviews

n=27 bereaved family members of 21 former ICU patients 3-12 months after the patient's death.
ICU setting.

Norway

To examine family members' experiences of end-of-life decision-making processes in Norwegian intensive care units to ascertain the degree to which they felt included in the decision-making process and whether they received necessary information.

The interviews were held on average 9 months post death of the relative introducing recall bias.

Lind 2013 ⁶⁰

Interviews

n=11 family members of 6 former ITU patients, that were awake and had assumed competence to make decisions.

Norway

To explore to what extent and in what ways can family members of alert and assumed competent people be involved in information and decision-making processes regarding possible termination of treatment.

This was a subset of the population of the Lind 2011⁵⁹

Nolan 2008⁸¹

Semi-structured interviews and survey/descripti ve data.

n=16 people recently (within 8 weeks) diagnosed with ALS and 16 matched family members they felt might participate in healthcare decisions with them.

USA

To compare the preferences of people with amyotrophic lateral sclerosis (who normally maintain capacity for decision making until close to death) for involving family in healthcare decisions at the end of life with the actual involvement reported by the family after death.

The people were followed every 3 months up to death, and the family members post death.

Royak-Schaler 2006⁸⁴

Focus group discussions.

n=24 spouses and first degree relatives of deceased people with cancer.

USA

To assess healthcare provider communication about end-of-life and hospice care with people with terminal cancer and their families, from the perspective of family members.

The educational back ground of the participants was higher than that of the general population which may limit generalizability.

Tilden 1995⁹⁷

Semi-structured interview.

n=44 Tertiary hospital in a major university medical centre and level I trauma centre.

USA

To describe how families reason about a decision to withdraw life support.
To describe the positive and negative effects of physicians' and nurses' behaviours on families during the process.

Participants were selected from intensive care settings.

Vig 2007 ¹⁰⁰

Semi structured telephone interviews.

n=50 surrogate decision makers of older, chronically ill, veteran people

USA

To gain an understanding of the experience and challenges of surrogate decision making.

Only 76% of the included population had made end of life decisions.

From healthcare professionals prospective

Addicott 2012⁵

Interviews

n=141 NHS and other service providers

UK

To identify what particular barriers exist for people with non-cancer conditions in accessing end of life care support.

Poor description of methodology, and difficult to establish whether direct to end of life decisions in the last days of life, or in a wider time frame.

Boot 2014¹⁰

Semi-structured interviews

n=12 community-based clinical nurse specialists from 2 teams, 1 based in a more rural and 1 based in an urban area.

UK

To identify the challenges experienced by clinical nurse specialists when facilitating advance care planning conversations.

Methods are described in insufficient detail (for example, interview questions/prompts not provided) and only 1 researcher seems to have coded the transcripts.

Fields 2013³⁵

Semi-structured interviews

n=6 hospice clinicians from a Marie Curie Hospice which provides specialist palliative care services.

UK

To explore clinicians' experiences of discussing preferred place of death with people receiving palliative care.

This study is restricted to decisions about preferred place of death. But, the extracted themes are generalisable to the overall topic of shared decision making.

Minto 2011⁶⁸

Semi-structured interviews.

n=6 One GP and 1 district nurse from each of 3 GP practices.

UK

To determine the factors that assist or hinder the primary care health professionals having discussions about the end of life.

The interviews were undertaken by clinicians known to the family.

Seymour 2010⁸⁷

Focus group discussions.

n=23 community nurses from 2 Cancer Networks

UK

To examine how community palliative care nurses in England understand ACP and their roles within ACP
To identify factors that may facilitate or constrain community nurses' implementation of ACP and nurses' educational needs.

Nurses who participated were self-selecting and therefore likely had a particular interest in the topic.

Stevens 2011⁸⁹

Focus group discussions.

n=34 healthcare professionals.

UK

To investigate the views of healthcare professionals regarding ACP.

Included non-cancer conditions such as COPD.

Tan 2013 ⁹⁴

Semi-structured interviews.

n=11 family physicians with experience of dealing with conflict with surrogate decision makers of dying people.

Canada

To describe the conflict experience that family physicians have with substitute decision makers of dying people and to identify the factors that may facilitate or hinder the end of life decision making process.

The study only explores physicians who had experience of dealing with conflict, and did not speak to those who reported no conflict, this group may have had refined skills in preventing or handling conflict.

Thompson 2003 ⁹⁶

Semi-structured interviews and focus groups.

n=12 interviews (4 hospital doctors, 4 GPs and 4 nurses); 6 focus groups (hospital nurses, hospice staff, GPs, consultant geriatricians, geriatricians in training and an interdisciplinary group, n=34)

UK

To discover the views of health professionals on advance directives.

This study is indirect evidence since advance directives are not the focus of the review question. However, 1 theme relates directly to the directive having a facilitating effect for discussions of other areas of end-of-life decision making. It is therefore included.

Willard 2006¹⁰⁸

Observation and semi-structured interviews.

n=29 cancer nurse specialists from 5 hospital trusts.

UK

To discuss the challenges to appropriate EOL care in acute hospitals in the UK, highlighting how this setting contributes to the patients' and families' care and treatment requirements being excluded from decision-making.

From: 7, Shared decision making

Care of Dying Adults in the Last Days of Life.

NICE Guideline, No. 31.

National Clinical Guideline Centre (UK).

London: National Institute for Health and Care Excellence (NICE); 2015 Dec 16.

NCBI Bookshelf. A service of the National Library of Medicine, National Institutes of Health.

Table 31Summary of studies included in the review