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National Clinical Guideline Centre (UK). Care of Dying Adults in the Last Days of Life. London: National Institute for Health and Care Excellence (NICE); 2015 Dec 16. (NICE Guideline, No. 31.)
7.1. Introduction
Recognising and communicating that a person is in the last few days of life is essential for good end of life care. Ensuring good communication about this with the person and those important to them is a crucial part of shared decision making.
Shared decision making is considered by the Committee to be an important factor to enable appropriate changes in clinical management. This ensures that the dying person's expressed wishes are considered and met. The Committee noted that NICE had already published related guidance on patient experience in adult NHS services74 that contained relevant recommendations linked to shared decision making which would be applicable to this population.
Caring for people who are probably going to die within hours or days carries special responsibilities for the clinicians, which may not apply in other medical scenarios. One particular issue that the Committee recognised is when a dying person had expressed specific preferences or wishes regarding their care, but circumstances in their final illness indicate that their interests might be better served if these were not observed. For example, a person may have indicated a preference not to have a syringe pump for medication as they were dying, but then the person develops status epilepticus as a result of cerebral disease associated with their condition. It would place the clinician in a very difficult situation professionally if they followed the patient's preference and treated the fitting over several hours or days with short-acting injections of anti-epileptic drugs. This course of action would also have a significant impact on the experience of those important to the patient who had to observe the fitting. In this case, it could be argued that it would be better to start a syringe pump with a continuous infusion of anti-epileptic drug to control the fitting. If the patient recovers and regains consciousness, the decision could be explained and a new course of action could be agreed between the dying person, those important to them and the multiprofessional team.
Shared decision making in the last few days of life should ensure that the dying person, wherever possible, those important to them and all relevant health and social care professionals are involved in the development and delivery of an individualised care plan. Those important to the dying person will often have been involved in their care during any preceding illness and may be able to provide information about their needs and wishes to health care professionals; this could include social, spiritual and cultural needs as well as clinical aspects of care. There should also be a multiprofessional approach to ensure that all aspects of the dying person's care are considered in all care settings.
As death approaches, a person may lack capacity to make a decision about their care either because they are unconscious or too drowsy or because they have another condition that affects the functioning of the mind or brain, such as delirium or intracerebral haemorrhage.
Increasingly, people may have expressed and recorded their preferences for end of life care in advance care plans. They may have appointed someone to have an Enduring Power of Attorney (which would only be valid if made before 1st October 2007), or a Lasting Power of Attorney for health and welfare decisions which came into effect after the introduction of the Mental Capacity Act4 in 2005. In some instances, people with reduced mental capacity may also have an Independent Mental Capacity Advocate (IMCA). It is crucial that appointed individuals continue to participate in the care of the dying adult and are included in the shared decision-making process.
There are a number of factors that influence shared decision making at the end of life. In practice, the personalised care plan is the vehicle by which these decisions and their impact on care is put into place. In order to develop useful guidance about care of the dying adult, this review seeks to explore the facilitators and barriers around shared decision making and personalised care plans in the last few days of life.
7.2. Review question: What are the facilitators and barriers to the multi-professional team, dying person and those important to them in being involved in shared decision-making to inform the development of personalised care plans for the last few days of life?
For full details see review protocol in Appendix C.
7.3. Clinical evidence
Qualitative studies were searched for on the perspectives of healthcare professionals, and the dying person and those important to them about shared decision making in the last days of life. Twenty one papers reporting 19 qualitative studies were included in the review, these are summarised in Table 31 below.3,5,6,10,18,19,35,43,59,60,68,81,82,84,87,89,93,96,97,100,108
Directly applicable evidence was found with 9 studies identified from UK healthcare professionals (HCP) perspectives. These used a mix of interviews and focus groups to gather information and featured opinions from nursing staff to physicians, in a wide variety of settings from hospital and hospice to community services. One study from Canadian HCP's was also included as this focused specifically on the experiences of surrogate decision makers, which did not feature in the UK studies.
Only 1 study6 was identified from UK family members' perspectives. Twelve studies were identified from the USA, Canada, and Norway which gave family members opinions.
On meta-synthesis of these papers, 4 key common themes were identified. These are listed in Table 32, and Figure 5. Key findings from these studies are summarised in the clinical evidence summary below (Table 32, Table 33, Table 34, and Table 36). See also the study selection flow chart in Appendix E, study evidence tables in Appendix H, and excluded studies list in Appendix L.
7.3.1. Summary of included studies
7.3.2. Themes and sub-themes derived from the evidence
7.3.3. Evidence summary
7.4. Economic evidence
Published literature
No relevant economic evaluations were identified.
See also the economic article selection flow chart in Appendix F.
7.5. Evidence statements
Clinical
Qualitative evidence indicated several themes from healthcare professionals, family members and surrogate decision makers experiences, opinions and attitudes on the barriers and facilitators to shared decision making in the last days of life. Low quality evidence from 14 qualitative studies (n=497) reported several sub themes related to the healthcare professional that could act as facilitators or barriers to shared decision making. These included communication skills, a trusting relationship built with good rapport with the dying person and those important to them, adequate information provision, clinical experience and certainty in diagnosis.
Themes related to the dying person were also identified in low quality evidence from 2 qualitative studies (n=30), including denial about prognosis and an unwillingness to discuss end of life care acting as a barrier to shared decision making.
Eight qualitative studies (n=267) reported on low to moderate quality themes related to those important to the dying person including the negative impact of denial about prognosis, a lack of medical knowledge, family conflict or competing responsibilities can have on shared decision making. The same studies also reported on factors associated with those important to the dying person that can facilitate shared decision making including family support, previous decision making experience and knowledge of the dying person's opinions.
Low quality evidence from 6 qualitative studies (n=135) was identified for themes relating to available resources that can influence shared decision making including documentation tools, available equipment and staff, and private room availability for discussion.
Economic
No relevant economic evaluations were identified.
7.6. Recommendations and link to evidence
| Recommendations |
|
|---|---|
| Relative values of different outcomes | The Committee agreed that the themes which highlighted the barriers and facilitators to shared decision making in the last days of life were crucial to this review. This was highlighted as an element of care of the dying adult that required improvement in the Neuberger review.30 The Committee decided to focus the review on the experiences, opinions and attitudes of the dying person, those important to them, and the healthcare professionals involved in their care, as it was felt that each population would offer a unique and informative perspective on this topic. |
| Trade-off between clinical benefits and harms | The evidence identified a number of barriers and facilitators to effective shared decision making. These were divided into factors relating to the dying person (including denial about prognosis), those important to them (including family support and conflict, and their current understanding of medical information), healthcare professionals (such as their communication skills, and their relationships and rapport with the dying person) and resources available (for example clinician or private room availability). They felt that involving the dying person and those important to them in shared decision making improved end of life care for the dying person. The Committee considered that many of these themes could inform recommendations to improve shared decision making to reduce anxiety of the dying person and those important to them. These recommendations would ensure that dying persons and those important to them are provided with the information needed to make decisions regarding end of life care. No harms were identified by the Committee. |
| Trade-off between net health benefits and resource use | No economic evaluations were identified that addressed this review question. There could be some economic implications associated with shared decision making in terms of healthcare professional time and the availability of support out of normal working hours. However, it was the Committee's opinion that this should already be in place. No quantitative evidence was reviewed for this review question, but the Committee was convinced that these recommendations would improve patient care at a reasonable additional cost. |
| Quality of evidence | Qualitative studies were identified from the perspective of those important to the dying person, surrogate decision makers and healthcare professionals. There were no identified studies from the perspective of the dying person in the last days of life. This was understood by the Committee given the context, as enrolling and interviewing people in the last days of life may provoke unnecessary stress. Evidence was identified in dying people before this time point for the context of shared decision making in the last days of life and this was included in the review due to paucity of evidence but downgraded in quality for applicability to the review population. The quality of evidence ranged from moderate to low; this was due to limitations in the studies including risk of bias and the applicability of the findings given that some studies were conducted in other healthcare settings to the UK. The evidence reviewed also examined wider topics then barriers and facilitators to shared decision making. The recommendations were based on the evidence and the consensus opinion of Committee members. There were no additional themes the Committee could identify from their experience that were not picked up in the evidence review, and all of the included themes were felt to be relevant. |
| Other considerations | The Committee recognised that shared decision making is standard across all medical specialities, but is especially important to consider in the last days of life. It is important to involve the dying person in decisions about their care, if they so wish. Equally, care providers should respond, where possible to decisions the dying person has made about their care in the last days of life. They noted also that the dying person may not wish to be involved in shared decision making and, if so, this should also be respected. When working in partnership with the dying person to support decision making, the Committee felt that it would be important to gather information on a number of areas, including the location of items listed in any advance statement or any advance decision to refuse treatment, and the dying person's cultural preferences or religious and spiritual requirements, or cognitive abilities. The committee also noted that people at the end of life may have already identified a person with Lasting Power of Attorney as part of an advance care planning process and this would be of relevance particularly if the person was unconscious or unable to take part in a shared-decision making process for any other reason. The Committee discussed the importance of being aware of different faith groups within the local community and noted in some areas there are “faith forums” that can provide useful information. The Committee recognise that organ donation is important in end of life care planning and may be something discussed under personal goals and wishes. The Committee noted that there is existing NICE Guidance on Organ donation for transplantation (CG135). They noted that if the formal legal test, as described in the ‘best interests process’ outlined by the Mental Capacity Act,4 has been applied and a person is shown to lack mental capacity, then their views expressed in advance care plans and Advanced Directives should be honoured according to legal requirements. The Committee noted that people with reduced capacity defined in the Mental Capacity Act4 may have other needs and requirements, and these too should be honoured. The Committee felt it was important to consider assessing capacity in a dying person in the context of shared decision making, in view of concerns surrounding the use of the LCP that the person and those important to them were being excluded from decisions about their care. An adult is deemed to have capacity unless, having been given all appropriate help and support, it is clear that they cannot understand, retain, use or weigh up the information needed to make a particular decision or to communicate their wishes.37 Health care professionals have a statutory obligation to follow the principles of the MCA 20054 (outlined below) when assessing an individual's mental capacity: The following principles apply for the purposes of this Act.
“A person lacks capacity in relation to a matter if at the material time he is unable to make a decision for himself in relation to the matter because of an impairment of, or a disturbance in the functioning of, the mind or brain”. “A person is unable to make a decision for himself if he is unable
A dying person should be involved in shared decision making to the level that they wish (and are able) and practical steps should be taken to assist them to make decisions about their care, for example, using simple language and not jargon. The committee recognised that, although some people may be unconscious or confused in their last days of life, it should not be assumed that this would always be the case and the principle that the dying person should always be involved in decision-making should prevail. They felt it important to note that capacity is decision specific, for example, a person may have capacity to decide if they want to drink either water or milk, but they may lack capacity to make more complex decisions about their treatment. The GMC guidance on Treatment and care towards the end of life: good practice in decision making (2010)37 also sets out decision making models for both patients with capacity to decide and patients who lack capacity to decide (sections 14 and 15) which would be applicable to people within the last few days of life. Variations in the availability of equipment were identified as a potential barrier to initiating discussions about the needs and wants of the dying person. Professionals may be unhappy to enter into a conversation about needs and desires unless they were certain that the resources were available locally to make a request possible. The Committee noted that in transferring someone to their home to die, a fast track referral for continuing care may be required. The Committee discussed these issues in the context of shared decision making and felt it was important to ascertain what resources were available such as the delivery of meals, equipment, or care at night. This information should help guide appropriate shared decision making with the dying person. The particular needs of people who may be dying alone were discussed and the committee felt that their recommendation encompassed the need to establish support from voluntary agencies to enable the implementation of other recommendations. The information gathered in this assessment should then inform any shared decision making discussions with the patient. This should include a discussion on preferred care setting, preferences for symptom management and anticipated care needs. The Committee noted that discussions with other members of the multidisciplinary team may be via telephone discussion, and not necessarily convening a meeting of relevant professionals. The Committee agreed that this information should be captured within the dying person's individualised plan of care, and documented clearly within medical records to reflect that relevant discussions have taken place. It would be important to seek to ensure that the dying person is in agreement with the decisions captured as part of the discussion and permission to capture this information may be considered advisable where possible. The Committee considered that any healthcare professional delivering care was able to record such discussions in relevant care plans or medical records and that this documentation should also capture who had been involved in those discussions. The Committee recognised that the dying person's wishes or requirements may change within the last days of life and earlier documentation should be updated as appropriate and shared with all members of the multiprofessional care team, including those that may be working on different shifts throughout the day or week. When a person is recognised as being in the last few days of life, the Committee considered it important that an experienced clinician was available to make decisions in partnership with the dying person. Discussions about treatment on the medications and clinically assisted hydration provided should be undertaken within normal working hours, in conjunction with the wider multiprofessional team, the dying person and those important to them. The lack of availability of clinicians was highlighted frequently within the review; and frequent staff changes were also thought to increase confusion among family members, with regard to who to talk to about the dying person's care. The Committee considered this and felt that a lead clinician should be named, documented in the notes and the dying person informed of how to contact them. The Committee feel that this person may be a clinician or nurse or any relevant person delivering NHS care. They discussed that it is important that one care provider takes responsibility for leading the discussions linked to decision-making to avoid the situation of other providers thinking someone else had provided that function when, in reality, no-one had prioritised this issue. The Committee discussed how local policy or decision making may inform what the most suitable contact details to provide are. The Committee discussed that staff with limited experience in the caring of people in the last days of life may require support from staff with experience in shared decision making and that this should be available at all times in all settings. They also acknowledged that in some situations shared decision making can be complex and difficult to formulate, and if so, additional support from specialist palliative care services should be sought. The Committee noted that in response to changing personal needs requiring amendments to care, it would also be important to ensure that this process was available outside of normal working hours, for example, access to medication or withdrawal of treatments. It was also noted that the physical and psychological ability to look after the dying person may also be considered as the dying person's condition changes. This may have an impact on where the person dies, and that supporting those important to the dying person may prevent unnecessary hospital admission. The Committee discussed the importance of cultural, religious, social or spiritual preferences in shared decision making. The Committee noted the NHS Chaplaincy Guidelines,92 which provide a comprehensive description of good practice in chaplaincy care for the NHS in England. The Committee felt that these recommendations should be relevant to the care of people in the last days of life regardless of setting. They did note that additional resources or support may be required for older people or those living alone to enable them to die at home. The Committee felt it important to note that specialist advice should be sought if additional advice was required out of hours and chose to make a recommendation in this regard. The group considered specialist support to include any specialty who are able, because of their specialist experience, to aid shared decision making. |
Figures
Figure 5Themes
Tables
Table 30Characteristics of review question
| Population and setting | Adults who have been recognised as likely to be entering the last days of life, those important to them and healthcare professionals in all settings where NHS funded care is provided. |
|---|---|
| Topic of interest |
|
| Context | Context: Care planning in the last days of life. Outcomes: Themes will be identified from the literature. |
| Review strategy | Study designs to be considered: qualitative studies (for example, interviews, focus groups, observations). A thematic analysis of the data will be conducted and findings presented. |
Table 31Summary of studies included in the review
| 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. | |
Table 32Themes and sub-themes
| Main theme | Sub-themes |
|---|---|
| Factors relating to healthcare professionals (HCP) |
|
| Factors relating to family members and surrogate decision makers. |
|
| Factors relating to patients |
|
| Factors relating to available resources |
|
Table 33Summary of evidence: Theme 1 – factors relating to healthcare professionals
| Study design and sample | Descriptors of themes | Quality assessment | |||
|---|---|---|---|---|---|
| No. of studies | Design | Criteria | Rating | Overall | |
| Sub-theme 1: Communication skills | |||||
| 5 | 2 interview 3 focus group | Five studies with populations of family members and health care professionals in the UK, Norway and the USA reported poor communication skills acted as a barrier to shared decision making59,84,87-89,108. The following points were identified:
| Limitations of evidence | Serious | LOW |
| Coherence of findings | Coherent | ||||
| Applicability of evidence | Applicable | ||||
| Theme saturation/sufficiency | Unclear | ||||
| Sub-theme 2: Relationship and rapport | |||||
| 7 | 6 interview 1 focus group | Seven studies from populations of family members, surrogate decision makers and health care professionals in the UK, USA and Canada commented on the importance of a trusting relationship between healthcare professionals and dying people and their loved ones in facilitating shared decision making3,6,10,18,19,89,93,100. Respect and rapport as well as the length of time known to each other were reported as central to building a trusting relationship. When respect was perceived to be given it facilitated shared decision making, but when there was a perceived lack of respect it acted as a barrier:
| Limitations of evidence | Serious | LOW |
| Coherence of findings | Coherent | ||||
| Applicability of evidence | Applicable | ||||
| Theme saturation/sufficiency | Unclear | ||||
| Sub-theme 3: Information provision | |||||
| 6 | 4 interviews 2 focus groups | Six included studies with populations of family members surrogate decision makers and healthcare professionals in the USA and UK commented on the importance of information provision in facilitating or preventing shared decision making.3,84,87,89,97,100 Family members desired frank information about their relatives in order to help them facilitate shared decision making with 1 member in a USA study describing this as “starving for information”.97 Family members want this information in lay terms. One family member in an American study reported:
| Limitations of evidence | Serious | LOW |
| Coherence of findings | Coherent | ||||
| Applicability of evidence | Applicable | ||||
| Theme saturation/sufficiency | Unclear | ||||
| Sub-theme 4: Uncertainty in prognosis | |||||
| 3 | 1 interview 2 focus groups | Three reported studies of UK health care professionals identified uncertainty of prognosis as a barrier to shared decision making.6,87,89 One study87,88 of district nurses reported concerns about particular difficulties in prognostication of people with non-cancer long term conditions and the risk of raising issues about end of life care at an inappropriate time.
| Limitations of evidence | Serious | LOW |
| Coherence of findings | Coherent | ||||
| Applicability of evidence | Applicable | ||||
| Theme saturation/sufficiency | Unclear | ||||
| Sub-theme 5: Role of nursing staff | |||||
| 2 | 1 interview 1 focus group | Two studies from the UK and Canada interviewed surrogate decision makers and nurses who reported on the role of nursing staff in facilitating shared decision making.19,87 Often the nursing staff have more time to interact with the family and dying person better allowing them to elicit care preferences, facilitate family communication and enable a shift of care focus towards palliative care.87,88 | Limitations of evidence | Serious | LOW |
| Coherence of findings | Coherent | ||||
| Applicability of evidence | Applicable | ||||
| Theme saturation/sufficiency | No theme saturation | ||||
| Sub-theme 6: Clinical experience | |||||
| 4 | 4 interviews | Four studies with UK and Canadian health care professionals identified experience in communicating and formulating advance care plans as a facilitator for shared decision making.6,35,68,93
| Limitations of evidence | Serious | LOW |
| Coherence of findings | Coherent | ||||
| Applicability of evidence | Applicable | ||||
| Theme saturation/sufficiency | Unclear | ||||
| Sub-theme 7: Clinician availability | |||||
| 5 | 5 interviews | One American study with a population of surrogate decision makers reported clinician availability as a facilitator for shared decision making, but too many clinicians acted as a barrier due to undefined role responsibility.100 Conversely 4 studies with population of UK, Norwegian, and American family members and health care professionals list clinical unavailability as a barrier to shared decision making.18,19,59,84,100
| Limitations of evidence | Serious | LOW |
| Coherence of findings | Coherent | ||||
| Applicability of evidence | Applicable | ||||
| Theme saturation/sufficiency | Unclear | ||||
| Sub-theme 8: Timing of decision-making | |||||
| 4 | 2 interviews 2 focus groups | Four included studies from UK health care professionals commented on the difficulty in timing as a barrier to initiating shared decision making. Concern that initiating the discussions too early could be perceived as uncaring was reported in 3 studies.35,87,89 Conversely a further study reported critical junctures in the course of a serious illness as an opportunity where current treatment plan could be re-evaluated and patient and family preferences could be explored.108 | Limitations of evidence | Serious | LOW |
| Coherence of findings | Unclear | ||||
| Applicability of evidence | Very applicable | ||||
| Theme saturation/sufficiency | Unclear | ||||
| Sub-theme 9: Role responsibility | |||||
| 1 | 1 interview | One study of UK health care professionals reported that it was the responsibility of the consulting doctor and specialists, and not nursing staff, who can be involved but only after initial communication and shared decision making have occurred.5 1 nurse reported:
| Limitations of evidence | Very Serious | LOW |
| Coherence of findings | Unclear | ||||
| Applicability of evidence | Very applicable | ||||
| Theme saturation/sufficiency | Unclear | ||||
Table 34Summary of evidence: Theme 2 – factors relating to family members and surrogate decision makers
| Study design and sample | Themes and findings | Quality assessment | |||
|---|---|---|---|---|---|
| No. of studies | Design | Criteria | Rating | Overall | |
| Sub-Theme 1:Family support and conflict | |||||
| 4 | Five interviews | Three studies conducted in the USA interviewed family members who had acted as surrogate decision makers.3,100 They commented on the importance of family support as a facilitator in being involved in shared decision making on issues relating to the last days of life. Four studies commented on family conflict (or lack of support) as a barrier to surrogates being involved in shared decision making. Two of these interviewed surrogate decision makers100 81, 1 family member, discussing withdrawal of life support 97, and 1 healthcare professional93,94. One study that interviewed family members acting as surrogate decision makers in the USA reported:
| Limitations of evidence | Serious | LOW |
| Coherence of findings | Coherent | ||||
| Applicability of evidence | Applicable | ||||
| Theme saturation/sufficiency | Unclear | ||||
| Sub-Theme 2: Lack of medical knowledge | |||||
| 1 | One interview | One Canadian study18 interviewed surrogate decision makers for people with Alzheimer's disease and reported on the surrogate decision makers self-perceived lack of medical knowledge as a barrier to shared decision making:
| Limitations of evidence | Serious | LOW |
| Coherence of findings | Coherent | ||||
| Applicability of evidence | Applicable | ||||
| Theme saturation/sufficiency | No theme saturation | ||||
| Sub-Theme 3: Denial about prognosis | |||||
| 1 | One interview | One study interviewed primary care physicians in Canada93,94 who reported denial about the prognosis as being a barrier to being involved in shared decision making in the last days of life:
| Limitations of evidence | No limitations | MODERATE |
| Coherence of findings | Coherent | ||||
| Applicability of evidence | Applicable | ||||
| Theme saturation/sufficiency | Saturated | ||||
| Sub-Theme 4: Competing responsibilities | |||||
| 1 | One interview | One study interviewing surrogate decision makers in the USA reported competing responsibilities preventing them from taking part in shared decision making.100 Examples reported included other family members the surrogate cares for, or the surrogates own health. | Limitations of evidence | No limitations | MODERATE |
| Coherence of findings | Coherent | ||||
| Applicability of evidence | Applicable | ||||
| Theme saturation/sufficiency | Saturated | ||||
| Sub-Theme 5: Previous decision making experience | |||||
| 2 | Two interviews | Two included studies interviewed surrogate decision makers in America who reported having previous decision making experience as a facilitator in involvement in shared decision making81,100:
| Limitations of evidence | Serious | LOW |
| Coherence of findings | Coherent | ||||
| Applicability of evidence | Applicable | ||||
| Theme saturation/sufficiency | Saturated | ||||
| Sub-Theme 6: Knowledge of the dying persons opinion | |||||
| 2 | Two interviews | Two studies both interviewed populations of surrogate decision makers and family members in the USA. One study3 reported having discussed the dying persons wishes prior to death as a facilitator in shared decision making with family members:
| Limitations of evidence | Serious | LOW |
| Coherence of findings | Coherent | ||||
| Applicability of evidence | Applicable | ||||
| Theme saturation/sufficiency | Unclear | ||||
| Sub-theme 7: Emotional burden | |||||
| 1 | 1 interview | One American study observed clinician-family meetings in ITU settings where discussion of withdrawal of life support were raised43. Family members reported on the emotional burden of perceiving ‘killing the patient or allowing them to die’. The concern about killing the patient seemed to make family members hesitant or unwilling to withdraw or withhold life support. | Limitations of evidence | Serious | LOW |
| Coherence of findings | Coherent | ||||
| Applicability of evidence | applicable | ||||
| Theme saturation/sufficiency | unclear | ||||
Table 35Summary of evidence: Theme 3 – factors relating to patients
| Study design and sample | Descriptors of themes | Quality assessment | |||
|---|---|---|---|---|---|
| No. of studies | Design | Criteria | Rating | Overall | |
| Sub theme 1: Denial in prognosis | |||||
| 1 | 1 interview | One study in primary care in the UK interviewed patients, healthcare professionals, and family members about shared decision making.6 From 1 trial both the patient and the healthcare professional reported denial in prognosis as a barrier in shared decision making:
| Limitations of evidence | Serious | LOW |
| Coherence of findings | Coherent | ||||
| Applicability of evidence | Not applicable | ||||
| Theme saturation/sufficiency | unclear | ||||
| Sub theme 2: Willingness to discuss | |||||
| 1 | 1 interview | One study interviewed patients, family members and healthcare professionals in the UK around end of life decisions.6 Healthcare professionals identified the patients and family members initiative as a facilitator to involvement in shared decision making:
“It's very much led by the patient: if they want to know…how they are doing whatever and be guided intuitively by them really. There are some patients who will be very open and frank with you and use all the right words but there are others that will say to you or indicate ‘I know where you're going with this and I don't want to hear” | Limitations of evidence | Serious | LOW |
| Coherence of findings | Coherent | ||||
| Applicability of evidence | Not applicable | ||||
| Theme saturation/sufficiency | unclear | ||||
Table 36Summary of evidence: Theme 4 – factors relating to available resources
| Study design and sample | Descriptors of themes | Quality assessment | |||
|---|---|---|---|---|---|
| No. of studies | Design | Criteria | Rating | Overall | |
| Sub-theme 1: Private room for discussion | |||||
| 1 | 1 interview | One American study3 interviewed family members who had had relatives die on ITU. They reported lack of private space for discussion and family conferences as a barrier to shared decision making: “There was a critical need for space for family conferences. There was 1 family there when we were there and they clearly needed to have conversation and make big decisions. And there was nowhere for them to be. We left the waiting room and shut the door 1 time because they were having a serious conversation and they clearly needed privacy and the waiting room was so tiny” | Limitations of evidence | Serious | LOW |
| Coherence of findings | Coherent | ||||
| Applicability of evidence | applicable | ||||
| Theme saturation/sufficiency | Unclear | ||||
| Sub-theme 2: Documentation tools | |||||
| 5 | 5 interviews | Five UK studies reported on the use of documentation tools in shared decision making such as the Preferred Priority's for Care (PPC) or advance care planning (ACP).35,68,82,87,89,96 Health care professionals reported the PPC as a facilitator, opening discussion with the dying person and empowering healthcare professionals. They believe the PPC gave the dying person and relatives the opportunity to make informed choices and provided holistic care. Nurses believed the document promoted discussion at team meetings and boosted multiprofessional working. One health care professional commented: ‘”…the main advantage of an advance directive is as a tool for communication between the medical staff, the rest of the multi-disciplinary team, the patient and the patient's loved ones.”’ However, healthcare professions were concerned some patient and relatives viewed the PPC negatively feeling that it took away hope and was used as a tick box exercise. Nursing staff also reported that ACP documents can be difficult to store and access at appropriate times given the multiple locations some people are treated at. | Limitations of evidence | Serious | LOW |
| Coherence of findings | Coherent | ||||
| Applicability of evidence | Very applicable | ||||
| Theme saturation/sufficiency | Unclear | ||||
| Sub-theme 3: Available equipment and staff | |||||
| 1 | 1 interview | One study87,88 with a population of UK nursing staff working in the community highlighted a disparity between resources available and the dying persons' and family's expectations acting as a barrier to shared decision making. District nurses faced challenges when trying to prioritise their time to enable them to manage the patient dying at home in conjunction with their regular workload. They also reported having to wait for equipment. | Limitations of evidence | Serious | LOW |
| Coherence of findings | Coherent | ||||
| Applicability of evidence | Very applicable | ||||
| Theme saturation/sufficiency | No theme saturation | ||||