1. Barriers to accessing end of life care services

1.3. PICO table

For full details see the review protocol in Appendix A.

Table 1

PICO characteristics of review question.

1.3.1. Included studies

Thirty four qualitative studies were included in the review;^{48, 51, 67, 92, 157, 168, 183, 196, 223, 233, 234, 273, 306, 348, 371, 397, 430, 475, 481, 484, 502, 511, 554, 580, 582, 643, 649, 701, 736, 752, 771, 831, 832, 848} these are summarised in Table 2 below. Key findings from these studies are summarised in section 1.2.2 below. See also the study evidence tables in Appendix D, and excluded studies lists in Appendix F.

Table 2

Summary of studies included in the review.

1.3.2. Qualitative evidence synthesis

Table 3

Review findings.

1.3.2.1. Narrative summary of review findings

Barriers and facilitators to access to end of life care

Review finding 1: information about prognosis

There was a lack of information about prognosis, disease progression and how to plan for the future.^{48,273,484,67,51,511} Delivery of prognoses varied, some terminal prognoses and future care needs were provided very generally, sometimes clearly,¹⁶⁸ but were often vague, overoptimistic and lacked information on what to expect.⁶⁷ Physicians were sometimes reluctant to give complete disclosure of prognosis.¹⁶⁸

Review finding 2: timing of information

Providing information at an earlier stage about EOL hospice care was highlighted¹⁶⁸ Patients felt information about disease trajectory and the dying process should be given much earlier, even right after diagnosis.^168,223,511 This included information on medical treatments as well as the services to assist with care at the end of life.¹⁶⁸ Some suggested waiting for initial shock of diagnosis to be processed and adjust to the treatment plan, or delaying in-depth information until the patient’s health worsens. Or some thought not until something imminent occurs or there are no other options, with a few specifying that early information would interfere with hope and quality of life.²²³ Some participants would actively avoid thoughts of declining health and end-of-life decisions and wanted to live in the present.^701,51 Participants hoped health care providers would have adequate training to inform patients at the right time what to expect and not to wait until the last minute.¹⁸³ One study found that participants thought ACP should be started early.²³⁴

Review finding 3: Awareness of services

Four studies found that awareness of service provision was sometimes lacking.^{48,92,223,554,511} A number of people felt they had little support from services. Limited GP involvement and lack of continuity of care were frequently cited difficulties. Accessing supportive care was described as being extremely difficult for some people, and it was provided at a very late stage in the disease trajectory.⁸⁴⁸ The majority of participants in a study of people with heart failure⁵⁵⁴ were unprepared for the palliative care referral and consultation, had little or no previous understanding of the term palliative care and were unaware of the that a referral had been made. Those who were not expecting it reacted with suspicion, caution and/or scepticism. Those whom the consultation was expected welcomed it⁵⁵⁴. In one study²²³ many people did not utilise hospice because they do not understand enough about it, were not thinking deeply enough about it, or did not learn about it until the last minute. They primarily wanted to know about hospice logistics, including the range of services, locations of care, members of the hospice team, and frequency/length of home hospice visits. Almost all respondents identified interest in reviewing information about hospice in brochure, video or internet format, for a gentle introduction, a broad picture or an in-depth look in to what hospice is actually like.

Review finding 4: Understanding end-of-life care services

Knowledge and understanding of an End-of-life long-term-care service was variable.³⁹⁶ There were many overlapping and competing expectations with moving from life-prolonging to life-enhancing care. Palliative care held negative connotations, was perceived to be against life-prolonging, and to some equalled dying.⁴⁸¹ Many were unfamiliar with Palliative Care when first mentioned by their doctor and so it produced feelings of anxiety and fear about what it meant for their life expectancy.⁴⁸¹ Patient and caregiver understanding of hospice in the transition process varied, with many mentioning a lack of adequate understanding of hospice philosophy and services.¹⁶⁸ Terminology and service organisation could be a barrier. People with heart failure considered palliative care was synonymous with hospice care. Hospice care was understood as not allowing aggressive management of their Heart Failure symptoms so not controlling them the same as before. They Palliative Care therefore would have no place in their current plan of care, but might be appropriate late if current treatment plan failed or disease became ‘really fatal.’ Those who did not define Palliative Care as hospice, welcomed Palliative Care involvement, even if hospice was not an option for them.⁵⁵⁴

Review finding 5: Readiness for discussion

Participants felt that both the doctor and patient needed to be ready for the discussion. For the patient this means the desire to know the facts overrides any fear or ambivalence about discussing these issues. A key precursor to readiness for patients was adjustment and acceptance, acknowledging their impending death while still maintaining realistic hope and a good quality of life.⁸³¹ There are a variety of factors which can aid or impede acceptance and adjustment including continuing treatment to appease family, older people may accept it easier as had long and full life, sufficient time to adjust to disease, faith and exposure to symptoms (their own and others) and evidence of disease, such as scans⁸³¹ and seeing other’s experiences of death. Lack of familiarity with with palliative care when it was first mentioned by doctor resulted in feelings of anxiety and fear about what it meant for their life expectancy. Phasing in of palliative care often unsettled experiences of the care and treatment the participant was receiving, making them question their expectations of the future.⁴⁸¹ For the doctor this means feeling comfortable, confident and able to discuss these issues, and clear that the patient desires this information. Readiness was felt to be necessary for discussions to achieve the best possible outcomes with the least discomfort.⁸³¹ Appropriate timing and personal coping style helped influence readiness to discuss EOL issues.⁸³² Some felt it was too early to consider EOL issues in their present circumstances;⁸³² some found there was no point in beating around the bush. The patients coped with illness by being realistic rather than avoiding what to come.⁸³² Focusing on positive information rather than negative future outcomes helped coping.

Review finding 6: communication skills

Patient and HCPs’ communication skills were an important factor in creating the conditions for discussion of prognosis and EOL issues and discussion. Important communication skills for doctors included maintaining a calm and open manner, treating patients as individuals, being sensitive to their individual needs⁸³¹ and the perception of compassion.¹⁶⁸ Patients needed to feel comfort, trust and respect in their doctor.^{168, 348} This did not always occur due to wrong predictions about time left, lack of explanations about what treatments available, wrong information or advice about treatments³⁴⁸ and when decisions were made without the patients.⁴⁸⁴ Continuity in this relationship was important and the Doctor should honestly discuss the situation, acknowledge and explain uncertainty, relate stories of other patients to foster hope⁸³² and make a recommendation for a plan of care.¹⁶⁸ Although control of the discussion should be actively given to the patient, the doctor should also take the initiative to raise complex or difficult topics such as prognosis and end-of-life issues⁸³¹ as participants can find it difficult even if they want to.⁴⁸⁴ Continuity fostered trust between the patients and the HCPs. It meant they did not have to repeat their medical histories, nor build new relationships and trust with the HCPs.¹⁹⁶ Lack of trust diminished participant’s sense of control and placed social and emotional burdens on participants. In contrast, strong trust provided a sense of control.⁷⁰¹ Direct communication involved making clear statements about priorities and goals to guide delegates; allowing participants to maintain a sense of control.⁷⁰¹ One study found that most participants thought nurses were skilled communicators, who could engage patients and caregivers in often difficult discussions about death and dying.³⁷¹ In a study of Bangladeshi patients in East London between 1986 and 1993, Spruyt 1999⁷⁷¹ found few people were fluent in spoken English, and fewer literate in English which led to a reliance on family members to translate, with the resulting poor communication in a majority of cases

Review finding 7: options and involvement in decision-making

Many participants mentioned their wish to have options, they felt they needed more information and the option to discuss the issues if they wished,^{48,484,736,848} and be included in treatment option discussions, even if they felt they should accept the professionals’ recommendations.^{484, 582} One study found a quarter of participants had not been presented with different options for future treatment or care³⁴⁸ and in another study⁵⁸² most patients and carers did not feel involved in decision-making or empowered to work in partnership with professionals. Carers reported that some patients were involved in the decision-making process but caregivers often controlled the flow, withheld information and shielded patients from decisions.¹⁶⁸ A brochure and advanced directive template helped patients learn more about their end-of-life care options⁷⁵² and the palliative care team were found to take a broader approach, discussing all available options of palliative care and what to expect with their situation, which made them more equipped to make decisions than previously.⁵⁵⁴ Patients expressed preference to stay at home, often even with increasing risks at home, rather than being admitted to hospital. All patients stated they had made the decision about their admission into hospital, and this was the view shared by the carers. In this they weighed the benefit of being at home with the risk. They used practical resources, mainly equipment and carer support and anticipating future needs to manage increasing risks. As their condition advanced/deteriorated, different pieces of equipment were sourced to manage the associated risks, enabling them to remain at home. Carers played a vital role in them staying at home.¹⁵⁷ Carers reported a lack of clarity in understanding their role and their involvement in decision making⁵¹¹.

Review finding 8: EOLC service

One study⁴⁷⁵ found people were more comfortable in discussing certain issues with Palliative Care staff than their GP, who they perceived as too busy and not specialised in their care. Patients trusted the palliative care professionals, who they felt were reliable and dependable³⁹⁶, “listening” to them, “more compassionate”, “spending more time” and having a holistic focus.⁵⁵⁴ They felt care was individualised as they had one nurse allocated, whereas other services had several individuals and treatment/management approaches. They could form a close relationship^396,475 and discuss ACPs and revisit when appropriate to the individual. Some needed several opportunities to talk about their wishes and makes plans. The decision-making was made together with the nurse and family and plans were perceived as being made jointly, rather than imposed.³⁹⁶ The patients had confidence that they would manage any problems that arose quickly and effectively.⁴⁷⁵ Nearly all reported a positive experience due to the Palliative Care team, feeling informed, supported and reassured. Palliative Care teams advocated for them, liaised with GPs and consultants, expedited prescriptions, facilitated complicated discharges and more flexible hospital appointments, coordinated care, arranged and conducted family meetings and overcame obstacles to them reaching their goals.^396,554 One family member describes them as navigating them through available services and getting a plan in place.⁵⁵⁴ There was a smoother transfer from treatment-driven to comfort care. They had an understanding of their prognosis which directed treatment goals, even though this understanding was not the same as the clinicians’ understanding of prognosis. Input from other health professionals, such as physiotherapists and occupational therapists were welcomed by some patients, often the main reason for going to PCDS, as they could improve their physical functioning and mobility⁴⁷⁵. Palliative Care staff monitored them regularly and would pre-empt any problems that might arise. The ability to access these professionals provided security and peace of mind that any problems arising could be dealt with.

Review finding 9: Co-ordination of EOLC

Studies found participants did not know who to call with questions.⁶⁷ They had difficulty navigating the healthcare system and found a lack of communication between health professionals, and a lack of care co-ordination and continuity among the numerous services providers which lead to perceptions of inconsistent and impersonal care.^{48, 67, 196,306,502,51} One study²³³ discovered that having a keyworker to coordinate care for patients with lung cancer was useful as a main point of contact who shared the diagnosis with, and referred them to, hospital clinicians. The key worker liaised between professionals which hastened treatment procedures and services. They co-ordinated services outside the hospital, enabling access to hospital, community and social services and felt supported and followed-up regularly. Whereas patients diagnosed with COPD who did not have access to a dedicated key worker reported access to services only during acute exacerbations when they would be admitted as inpatients, which was followed by a discharge back to the community. Lengthy periods between these meant scarce monitoring and follow-up after discharge apart from a small number who had consistent check-ups from their GP or hospital every 6, 9 and 12 months. Generally follow-up from professionals in the community or from the hospital was vague. Those with COPD who had lung cancer reported access to different services following the involvement of the key worker: access to financial services, psychological support from community palliative care. One study found that accessing all the relevant palliative care professionals in one place through PCDS was invaluable.⁴⁷⁵ One study found a wish for HCPs to look at them with a holistic lens, to support their multi-dimensional needs. They felt the benefit of their HCPs meeting, which produced connected and coherent care.¹⁹⁶

Review finding 10: discharge planning: practical arrangements

One study³⁰⁶ found that patients were sent out of the hospital without adequate time to prepare themselves, insufficient community support in place, and little knowledge of how to access the services they required. One account implied a lack of participation in the discharge planning process, with no medication, or instructions. A couple of participants had medication errors and another’s medications which were not similar to those at home.³⁰⁶ Teaching about medicine use for symptoms was sparse and not written down. Dosing instructions on the bottle were inadequate and caregivers had no contingency plans.⁶⁷ Also there were changes to medicines and inconsistencies in instructions.⁶⁷ Medication changes, usually when in hospital, led to doubts of their purpose and efficacy.⁵⁰² Patients and families noted a lack of power and choice at discharge. Continuous, flexible care provided patients with choice and facilitated communication. Strategies such as staff rostering and having a key contact person appeared to reduce fragmentation of care.⁷³⁶

Review finding 11: appointments

Patients and carers reported being unable to make timely GP appointments, experienced delays in obtaining prescriptions. Attending hospital or practice appointments could be a struggle, and unnecessary hospital admissions, particularly at weekends, were seen as distressing for, and by, patients. Patients and carers were reluctant to ask for help. Community services did not necessarily visit at a convenient time³⁹⁶. Having a pre-booked visit from the nurse, often on a weekly basis, meant that the onus was not always on the patient to ask for the nurse to call, and encouraged patients to feel empowered to request more contact if they felt it necessary.³⁹⁶ Participants appreciated having some control over when the nurse visited compared with other community nurse services.³⁹⁶ Attending clinics was physically demanding and often failed to address complex, ongoing problems.⁵⁰² There was a sense of imposed processes on patients without recognising the individual’s needs or wishes, from administrative procedures to provision of aids and appliances. One participant felt social service visits intruded too much on day-to-day routine. Furthermore reliance on family members for transport was common which meant a lot of time spent waiting, taking time off work caused annoyance and guilt.³⁰⁶

Review finding 12: planning ahead

One study³⁴⁸ found that planning for one’s own dying and death was not something that people with lung cancer reported having discussed, except in relation to the practical arrangements following death. They preferred to focus on living in the present by ‘carrying on as normal’ whilst they still felt reasonably well, seeking to postpone facing death until the time came. They also sought to delay awareness of their forthcoming death for as long as possible, preferring not to know when they would die. Family members also felt that when patients appeared well they did not discuss preferences for the future. There was little evidence of integrated care planning or any open discussions about the future between patients, family carers and health professionals. Talking about planning ahead or deteriorating was viewed negatively by some people who had not experiences of doing so.⁵⁰² In one study no patients reported formulation of end-of-life plans, or considered end-of-life preferences. All realised the importance of such conversations but did not know how to initiate such conversations with their loved ones. None had palliative care involvement.⁴⁸ Patients drew on their experiences of the healthcare system, their beliefs about illness and accounts from friends, family and the media to try to make sense of their health problems and treatments. Often it was understood as ‘old but not ill’. Beliefs about just being old meant they focused on the present rather than planning ahead and sought help if very ill or unable to cope.⁵⁰² Carers were often unaware of the patients’ risk of dying, it could be unexpected. None understood the benefits of planning ahead to optimise quality of life and death. Deteriorating health due to multiple illnesses was interpreted as ‘getting old’ so palliative care, which was largely associated with managing imminent death, had no role to play.⁵⁰² Despite being keen for more involvement in current decisions about their care, participants were very wary about making advance decisions about future treatment. They would not know their future preferences and did not see why making decisions in advance would be helpful.⁴⁸⁴ Anticipating future needs and making appropriate changes helped patients cope and remain at home. This often involved patients emotionally preparing themselves for change. If the deterioration was too sudden, they were unable to adjust quickly.¹⁵⁷

Review finding 13: ACP: knowledge

Information giving was seen by participants to be a critical element of the ACP process as it promoted self-reliance, alleviated fear and uncertainties and helped prepare them for the future, including death, and gave them the knowledge to make decisions that were compatible with their values and beliefs.¹⁸³ Even with apprehension in discussing topics such as death and dying, if deemed imperative, ACP was thought important to discuss in order to make the best plan practically, realise goals and fulfil relationship duties.²³⁴ ACP was thought to be important when they had a clear idea about how the process would benefit them, and was much less likely to engage in it if no benefit was perceived.¹⁸³

Review finding 14: ACP: written or discussed

Caregivers reported a lack of written advance directives, but revealed knowledge of patients’ wishes for care at the end of life as a way that allowed patient participation in decisions to be made.¹⁶⁸ Documentation of patients wishes (ACP) was easier for patients and caregivers who accepted encroaching death. Some caregivers felt documenting wishes enabled patients to ‘let go.’ They felt that LFC would have/gave patients’ autonomy, feelings of control and courage to say what wanted. Some patients did feel some security from its completion as know wishes would be respected and stop confusion of treatment preferences.^{580, 645} Caregivers felt that the letter did, or would help them feel prepared and know what to do, also to negotiate with other family members.⁵⁸⁰ Staff could be better informed and better outcomes for all. Some felt it assisted by opening family communication. It clarified decisions for some patients and weighted up QoL versus length of life. Some carers felt it facilitated decision-making through input from expert and sensitive staff,⁵⁸⁰ 50% in one study⁶⁴⁹ had signed standard advance directives as requested on entry of care home, the other 50% had no written directive or living will. Reason for not having ACP was they never thought of end of life plan, too sick now to think of anything. Hispanic participants feared risk of deportation from completing form.⁶⁴⁹ Study dialogue increased awareness of patient illness-related social deprivation, fear and end of life care preferences, subjects they had been unable to discuss before. Families talked of a patients’ silence, a stance embraced prior to the study sessions. Some patients felt isolated by anxiety and took opportunity of study to talk of concerns especially loneliness and fear.⁷⁵² Patients felt that the initiative to make a living will or proxy directive came from outside themselves, and had to be brought up by others. Some felt it was not needed until the end and could cause emotional distress to them or family to discuss it. It was assumed family would know the preferences without formal documentation.⁶⁴⁵ Some patients were willing to make arrangements for after their death, funerals were planned and will in place and ensure family taken care of. Arrangements for the time before death were less definitely defined. They had a range of strongly divergent ways to express their wishes: from written statements of intent (living wills and enduring powers of attorney) to oral delegation of decision-making power to family members or primary representatives. Some made contradictory statements regarding the intention and implementation of advance directives. Some rejected a living will completely as saw no need for the document or mistrust possible actions by physicians, and were confident family would handle things without any written directions.⁴³⁰

1.3.3. Excluded studies

See the excluded studies list in Appendix F.

1.3.4. Qualitative evidence summary

Table 4

Summary of evidence.

Table 5

Summary of evidence.

Table 6

Summary of evidence.

Table 7

Summary of evidence.

Table 8

Summary of evidence.

Table 9

Summary of evidence.

Table 10

Summary of evidence.

Table 11

Summary of evidence.

Table 12

Summary of evidence.

Table 13

Summary of evidence.

Table 14

Summary of evidence.

Table 15

Summary of evidence.

Table 16

Summary of evidence.

Table 17

Summary of evidence.

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Appendices

Final

Evidence review

Developed by the National Guideline Centre, hosted by the Royal College of Physicians

Disclaimer: The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or service users. The recommendations in this guideline are not mandatory and the guideline does not override the responsibility of healthcare professionals to make decisions appropriate to the circumstances of the individual patient, in consultation with the patient and/or their carer or guardian.

Local commissioners and/or providers have a responsibility to enable the guideline to be applied when individual health professionals and their patients or service users wish to use it. They should do so in the context of local and national priorities for funding and developing services, and in light of their duties to have due regard to the need to eliminate unlawful discrimination, to advance equality of opportunity and to reduce health inequalities. Nothing in this guideline should be interpreted in a way that would be inconsistent with compliance with those duties.

NICE guidelines cover health and care in England. Decisions on how they apply in other UK countries are made by ministers in the Welsh Government, Scottish Government, and Northern Ireland Executive. All NICE guidance is subject to regular review and may be updated or withdrawn.