Discussion

This case highlights how effective end-of-life care might be provided in a psychiatric hospital, to allow a patient to die being as comfortable as possible in an environment they are familiar with and to achieve continuity of care. In this setting, staff may not be familiar with how to provide optimal end-of-life care, but it can be provided with sufficient palliative care team input and good multidisciplinary working. Continuity of care is one of the key recommendations for achieving optimal palliative care in people with dementia that was made by the European Association of Palliative Care, ^{Reference van der Steen, Radbruch, Hertogh, Boer, Hughes and Larkin8} as the result of a five-round Delphi study involving 23 countries. The European Commission also declared in their summary report from the European Union summit on chronic diseases (April 2014) that, for an ageing society, ‘more investment and innovation are needed to redesign and adapt care systems, especially by fostering better integration of services and ensuring the continuity of care’ (p. 2). ⁹

This case is presented in light of new national guidance for end-of-life care provision. The Liverpool Care Pathway had been criticised for facilitating poor communication and decision-making, with ‘paternalistic failure’ seen as a key feature in its demise. ^{Reference Neuberger, Guthrie and Aaronovitch10} Now, guidance published by NHS England ¹¹ and yet more recent guidance from the Leadership Alliance for the Care of Dying People ² remind clinicians that good communication is key and that it should be ensured that patients and relatives are more central to decision-making. The Alliance also states that an individualised care plan for each patient must be coordinated by the senior clinicians involved in their care – for any patients who are dying in a psychiatric hospital, this means the consultant psychiatrists responsible for that patient. ²

The Alliance has declared five priorities for providing good end-of-life care, which we were able to address as follows.

1. • Priority 1: ‘This possibility [that a person may die within the next few days or hours] is recognised and communicated clearly, decisions made and actions taken in accordance with the person's needs and wishes, and these are regularly reviewed and decisions revised accordingly’. We benefited from the expertise of the community palliative care consultant and nurses in diagnosing when the patient was imminently dying, and we consequently communicated to her family that she was dying. We regularly reviewed the patient's care plan via multiple multidisciplinary meetings.

2. • Priority 2: ‘Sensitive communication takes place between staff and the dying person, and those identified as important to them’. Good communication with family members was key in Mrs S's case, and allowed us to produce a thorough care plan that was based on the patient's best interests. As we had already got to know the patient's family well during her time on the ward, this made these conversations easier, as her family felt able to be open with us about their concerns. Again, the local palliative care team helped us to achieve this goal by answering some of the more technical questions about dying that the family asked.

3. • Priority 3: ‘The dying person, and those identified as important to them, are involved in decisions about treatment and care to the extent that the dying person wants’. We faced difficulties in addressing this priority, as the patient had already lost the capacity to make decisions about her treatment and the advance decision was deemed invalid. All attempts were made by the medical team and speech and language specialist to enable the patient to communicate her wishes, but these were not successful. This issue was discussed with her close relatives. The relatives were included in multidisciplinary meetings and we ensured that they had ample opportunity to voice their opinions and concerns to all the professionals involved in the patient's care.

4. • Priority 4: ‘The needs of families and others identified as important to the dying person are actively explored, respected and met as far as possible’. The views of the patient's family were taken into account, such as that they were keen for her to remain on the dementia ward. They were very grateful to have their views listened to and considered. They were involved in best interests meetings about the patient and their opinions were actively sought out. We ensured their questions about the dying process could be answered comprehensively by inviting the palliative care consultant to a meeting with them, and they were offered the support of a chaplain.

5. • Priority 5: ‘An individual plan of care, which includes food and drink, symptom control and psychological, social and spiritual support, is agreed, co-ordinated and delivered with compassion’. Following multidisciplinary meetings, a comprehensive personalised care plan was constructed and reviewed at a later meeting. The Hospice at Home team provided assistance with symptom control, by helping the ward nursing staff to set up a syringe driver. The patient was able to communicate non-verbally when she was hungry, therefore food and drink was reserved for when she requested it. Intravenous fluids and excessive fluids via her PEG were avoided, as this would exacerbate her upper airway secretions. Psychosocial support was provided by keeping the patient in a place where she was familiar to and comfortable with the staff. She was permitted the freedom to pace the hallways freely as she wished, supervised by nursing staff. Spiritual support was offered via a chaplain.

The Hospice at Home team's input was essential to the care of Mrs S. It is helpful for wards to bring in a registered general nurse temporarily if they do not already have one. Additionally, debriefing for staff after Mrs S's death was considered essential, since the staff, having become close with her over many months, were affected by her death.

A major issue that we encountered was that Mrs S's advance decision was not valid. This is because she had made the decision at a time where it was deemed she lacked capacity to accept or refuse medical treatment. Her case highlights the importance of early advance care planning: it should be encouraged at the time of diagnosis of dementia or any other terminal illness, rather than at a time where capacity to make important decisions may have already been lost. ¹² This has been emphasised in guidelines from the National Council of Palliative Care, ¹² and two international Delphi studies have shown very high consensus between specialists that planning of future care should begin as soon as dementia has been diagnosed. ^{Reference van der Steen, Radbruch, Hertogh, Boer, Hughes and Larkin8,Reference Annear, Toye, McInerney, Eccleston, Tranter and Elliott13} Key principles of advanced care planning have been published by the University of Nottingham, ^{Reference Henry, Seymour and Ryder14} which stress the importance of introducing discussions sensitively, assessing the capacity of the individual to understand and discuss the options for future treatment, thorough record-keeping and regular review of decisions. Feeding by tube or drip is considered a form of medical treatment, ¹⁵ therefore decisions regarding the instigation or continuation of clinically assisted nutrition should also be discussed during advanced care planning, particularly in a case such as this where the patient was likely to lose her ability to swallow. A barrier to early advanced care planning is that individuals with dementia, their families and healthcare professionals may not always recognise dementia as a terminal illness. In fact, a recent Australian study published in the Journal of Palliative Care showed that around 50% of nursing home staff and 60% of family caregivers did not consider dementia to be a terminal illness. ^{Reference Robinson, Eccleston, Annear, Elliott, Andrews and Stirling16} Therefore, it is vital to provide education about the illness trajectory of dementia as soon as possible after diagnosis, to facilitate early advanced care planning.

Another issue highlighted by this case was that it is important for mental health trusts that include in-patient wards to establish trust end-of-life care policies. In creating these, it is advantageous to learn from care homes and palliative care centres about end-of-life care for patients with dementia: this is particularly pressing since research into palliative care in dementia has been limited and mostly consensus-based. ^{Reference van der Steen17} The nursing staff at the psychiatric hospital may have found it easier to provide care to Mrs S if they had more specific and targeted end-of-life care guidelines to refer to, targeted at providing care in a psychiatric hospital. There may also be a need to train staff on dementia wards in caring for dying patients. As all dementia services become more stretched with rates of dementia increasing (and people living longer with dementia), ³ it is likely to become even more important for different services to provide long-term palliative care for these patients. The financial costs of providing end-of-life care in a psychiatric hospital are large, due to the need to keep the patient on close observation, long-term hospital stay, occupying the time of multiple staff members with multidisciplinary meetings, and employment of a full-time registered general nurse if one is not already employed. However, our case, along with the recent guidelines, ² highlights the need to be flexible with where patients die and discuss the options in the multidisciplinary setting with the family. Hospices cannot always cater for patients with dementia due to their behavioural difficulties and transfer out of a psychiatric hospital may not always be in the patient's best interests. Therefore, palliative care and dementia care teams need to have flexibility in adapting to the changing needs of people with dementia, and to thus explore and evaluate new approaches to providing end-of-life care. There also needs to be further collaboration between palliative care and dementia specialists, and between NHS England, third-sector organisations, medical Royal Colleges and the Department of Health to meet this challenge. Through collaborative working, it may be possible to keep dying patients in the place where they are best suited.