| Recommendations |
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| 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. |
From: 7, Shared decision making
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