End of life care at home: The role of critical care transfer services

Abstract

Background:

Most people would rather die at home than in hospital but only 18% of patients do so. Palliative care focuses on the physical, spiritual and psychosocial wellbeing of patients and their families, which should include facilitating transfers home when possible. Patients can have more autonomy over their care and be surrounded by loved ones which can have a significant impact on their quality of life. In this article we describe two cases of home repatriation for palliation. Case 1 describes the transfer of a patient with difficulties and gaps in planning, but with a safe transfer ultimately. Case 2 recounts a more comprehensive planning process emphasising collaboration between teams.

Benefits and difficulties of palliative critical care transfers:

Facilitating home-based care aligns with patients’ desires for familiar surroundings and emotional support. A secondary benefit is that releasing a bed space allows another patient to receive critical care treatment. Challenges of palliative critical care transfers include needing a highly trained team and thorough planning. Early discussion with the family and community palliative care teams makes this a more feasible option for patients.

Conclusion:

A multidisciplinary team of hospital and community healthcare professionals working with the patient and their family can facilitate the transfer from intensive care to allow them to die at a place of their choosing. We should aim to fulfil these wishes at the end of life as it can greatly improve the patient’s and their family’s physical and emotional wellbeing during this difficult time.

Introduction

Every year, over half a million people die in England and Wales, and almost half of these are in a hospital setting. ¹ Three quarters of the deaths in hospital were anticipated ¹ and with a growing, older population these numbers are only likely to increase. Fifty to seventy percent of people state that they would prefer to die at home^2,3 but despite this 59% of deaths are in hospital, 17% are in care homes and only 18% are in the patient’s own home.^3,4 Approximately one-third of respondents to the 2018 Care at the End of Life National Report, whose relative died in hospital, rated their overall quality of care in the last 3 months of life as fair or poor. The overall experiences of people who died in their own home, in hospices or in care homes rated significantly higher. ¹ Palliative care as a speciality aims to ‘relieve the suffering of patients and their families by the comprehensive assessment and treatment of physical, psychosocial, and spiritual symptoms experienced by patients’, ⁵ including taking their wishes into account, which may incorporate being at home for the end of their life. Home transfers for palliative critical care patients are rarely carried out in the United Kingdom (UK) and there is very little literature available. Each case is unique; there are no protocols currently available and it requires a great deal of planning within the multidisciplinary team (MDT). There are many reasons why a transfer may not be possible including the acuity of illness, facilities at home and availability of transfer resources. In this article we discuss two cases which have taken place, along with the benefits and challenges of these transfers with the aim of increasing their prevalence in the UK.

Background

Palliative care focuses on physical, psychosocial and spiritual wellbeing for both patients and their families. ⁵ This includes symptom management and practical support, rather than trying to cure the illness, as the patients approach the end of life. ⁶ We know that most patients would prefer to die at home rather than in hospital and therefore we should try to facilitate that when possible. This promotes a sense of dignity, autonomy and emotional wellbeing which can greatly enhance quality of life for these patients and their families. Symptom relief and specialist nursing care can be delivered at home with guidance from a community palliative care team. Relief from pain and optimising comfort can be of both physical and psychological benefit, even more so when it is being received in one’s own home accompanied by loved ones. If transport home can be arranged, it can have a significant positive impact for both patients and their families in their final days.

The coronavirus pandemic was difficult for patients, staff and our healthcare system in many ways. Doctors experienced trauma and burnout like never seen before and intensive care units were stretched beyond capacity for months on end. However, advances in clinical practice, such as the rapid development of adult critical care transfer services (ACCTS), were accelerated due to an unprecedented demand for patient relocation. Dedicated transfer services have allowed for greater standardisation of care for the patients moved and prevents the removal of staff from the base hospital.

During the pandemic, transfers for capacity and subsequent repatriation to and from smaller intensive care units greatly increased. From April 2021 to April 2022, the SPecialist Retrieval & INtensive Care Transfer service (SPRINT) carried out 1275 transfers, made up of 759 for escalation or specialist services, 172 capacity moves, and 342 for repatriation. The remaining 2 were transfers home for palliative patients and we will discuss these further in the article. Although very few of these transfers have been carried out so far, there is increasing recognition of their importance and benefit to both patients and intensive care units.

Case 1: April 2021

A 50 year old man with no past medical history suffered an out of hospital cardiac arrest with significant downtime, was intubated and ventilated and admitted to ICU. Over the following 2 weeks he had a tracheostomy inserted and was weaned off cardiovascular and ventilatory support. Unfortunately he did not have any return of awareness. He was breathing spontaneously via a tracheostomy and was otherwise unsupported. During this time discussions had started around home nursing care which the family would privately fund. Over the next 2 weeks community nursing was arranged, equipment was sourced and plans for the transfer were finalised.

On the day of transfer, it was agreed that a nurse and single ambulance crew member would make the journey with the patient’s partner also in the ambulance. All parties agreed that in the event of cardiac arrest, the ambulance would continue to the patient’s home. The standard transfer checklist was performed. The two-and-a-half-hour journey was uneventful but unanticipated problems upon arrival at the house included needing to lift the stretcher up some steps and waiting for the nursing team who arrived 45 min after the patient, thereby delaying the ACCTS team’s next assignment.

This was the first SPRINT transfer from a critical care environment to a patient’s home. It occurred through collaboration between the family, hospital critical care team, community nurses and ACCTS. There were difficulties on the day and gaps in the planning and communication between teams. However, the patient was transferred safely, with no signs of discomfort, and his family were extremely grateful for the work done by the MDT. He did not require any organ support at home and he passed away a few days later. The difficulties were reflected upon and improved future palliative transfers carried out by the ACCTS.

Case 2: April 2022

A 35 year old man with an advanced malignancy with neuro-meningeal involvement was intubated and ventilated on ICU. The oncology MDT had agreed that this was a terminal illness with no viable treatment options. The hospital palliative care team was involved from early stages to maximise comfort and initiated a syringe driver in ICU. He did not have any awareness on lightening of sedation. The patient’s wife was a doctor and said that above all else he would want to spend his final days at home and requested a transfer and terminal extubation at home.

Lessons were learnt for this second transfer. A formal MDT meeting was arranged with critical care, hospital and community palliative care and the family. The case was discussed amongst the SPRINT consultants to decide whether they should carry out the transfer and then two of the team planned the transfer and extubation.

This transfer occurred during an overlap in two teams’ shifts, meaning that the other team could still attend calls for urgent transfers, and there was less disruption to the service. The transfer team consisted of the duty consultant, a senior registrar and nurse.

On arrival at the patient’s home the family, community nursing and palliative care teams were standing by. The consultant performed the extubation and stayed with the patient until the nurses and family were comfortable with his care. The syringe driver was continued for symptom control and the patient was attended by loved ones at the end of his life.

Benefits of critical care transfers

By facilitating home-based care, these transfers can meet the patient’s wish to spend their final days in a familiar environment, surrounded by loved ones. This setting offers a more intimate and personal experience, allowing for increased emotional support and connection during this difficult time. Family members do not need to travel to the hospital which may be a considerable distance while also having restrictions on visiting times and the number of visitors allowed. Additionally, care at home provides patients with greater autonomy and dignity by tailoring interventions and treatments to their individual needs and preferences.

While patient safety and experience will always lead our decision-making, resource management is another important factor to consider. Transferring a patient directly home, following the principle of ‘right patient, right bed’, prevents an unnecessary transfer to a ward from critical care, allowing for better patient flow within the hospital. Additionally, the cost of a critical care bed in the UK is £1621.16 per day ⁷ and they are a limited resource in any unit. Home nursing costs may be covered by the family, local charities or by the government and this should be part of the discussion within the MDT. Generally, if a patient has more than £23,250 in savings then they will need to self-fund. ⁸ The NHS website quotes a live-in-carer to cost ‘as much as £1600 a week if you need a lot of care’ ⁸ but it may be more than this for our cohort of patients, particularly if they require multiple carers. In our cases the homes did not require a ventilator which reduced the costs and logistics in terms of the specialist nurses, equipment and oxygen supply.

Difficulties of critical care transfers

Discharge from critical care to home is rare, particularly when the patient is intubated. This is due to the myriad difficulties associated with these transfers. A retrospective study in 2014 looked at potential home discharges from seven critical care units across two hospitals. ⁹ They developed criteria to determine which patients were suitable for discharge home. These included stability for at least 24 h prior to death, no involvement of the coroner’s office or the police and no physically demanding care needs such as an unstable spine, complex wound care or large gastrointestinal losses. Of the 422 deceased patients in a 12 month period, 322 (76.3%) did not meet the required criteria. 100 (23.7%) patients did meet the criteria but were not transferred home. ⁹ This was a retrospective study identifying potential transfers and had quite broad exclusion criteria. If planning a transfer for a specific patient, we would not necessarily exclude them for physically demanding care needs if their comfort and dignity could be maintained at home, which would be discussed with the community palliative care and nursing team beforehand. Figure 1 shows a proposed standard operating procedure for home transfer and extubation of a terminally ill patient.

Figure 1.

Proposed standard operating procedure flowchart for home transfer and palliation of ventilated terminally ill patients at the end of life.

Palliative critical care transfers need a highly trained team, specialist equipment and thorough planning. The transfer team consists of an intensive care doctor and nurse, specialist ambulance staff as well as equipment and monitoring to the same standard as a critical care unit. There are a limited number of these teams and currently palliative care transfers are prioritised below those for specialist treatment, repatriation and capacity. In addition, community nurses may need to be comfortable managing patients with a tracheostomy in a non-medical environment, and potentially assisting with a terminal extubation for some patients. The patient’s home may need additional specialised equipment.

Planning requires an MDT consisting of critical care, hospital and community palliative care, home nursing, the family and, when possible, the patient. As the end of life can progress rapidly, effective communication between these groups is imperative to ensure that the transfer can occur in a timely manner without compromising the quality of care.

Terminal extubation

Terminal extubation at home is possible once the critical care transfer is complete. It should be performed by senior staff – usually an intensive care consultant or senior registrar, accompanied by an intensive care nurse and there should be appropriate symptom control during and after extubation. The procedure can evoke intense emotions for the family and therefore they should be fully informed, well-prepared and supported by the team. All parties need to be aware that death may or may not ensue promptly after extubation. ‘Do not attempt cardiopulmonary resuscitation’ (DNACPR) status should be established before the transfer, and the family must understand that there is a risk of death during the journey, in which case the transport will continue to the home if the family agree. ¹⁰ Counselling and bereavement services should be readily available to help navigate the emotional challenges associated with end-of-life care.

Terminal extubation at home is not a common occurrence and can be emotional for healthcare professionals as well as for the family therefore, along with a clear plan, it can be helpful to discuss expectations and concerns with the team. Following the procedure, a debrief should occur to give members a chance to discuss what was done well and where improvements could be made. It also allows staff to speak about their feelings with the team. The family should be followed up, after an initial grieving period which is agreed beforehand. A case series of eight patients in America demonstrated that with a highly trained team; appropriate monitoring and equipment; as well as careful planning and co-ordination, terminal extubation at home is possible and can help to fulfil the wishes of a patient and their family. ¹¹

Conclusion

Most people would rather die at home than in hospital, therefore we should aim to facilitate this in critical care patients when possible. This is a more feasible and compassionate option than we often think. Being surrounded by loved ones in a familiar environment can bring peace to the patient in their final days. It can be easier for family and friends to visit and spend more time with the patient which can give comfort to all parties. Care at home gives the patient more autonomy and dignity by allowing them to have individualised care which may include fewer medical interventions. Finally, these transfers can optimise resource allocation for the hospital and healthcare system by creating a bed space in critical care for another severely unwell patient. Although these transfers, particularly if combined with extubation at home, can take many hours, they are infrequent and can be planned for early morning or at the crossover between two shifts to minimise the impact on the service. If the frequency increases, then funding from the Clinical Commissioning Groups would be the next step for the ACCTS.

While these transfers may not be possible or appropriate for everyone, in applicable cases, discussions should be had with the patient, family and palliative care as early as possible to begin the complex planning process. Collaboration between healthcare professionals and open communication with the patient and their family are essential to ensure the success of such transfers. These cases outlined some of our experiences and we hope to facilitate the conversation to share information and learning with other ACCTSs. Ultimately, our goal is to provide the best possible care during this difficult phase of life by honouring the wishes and values of the patient, while offering comfort and support to their loved ones.