I thought I knew a lot about end-of-life care at home. For nearly 30 years, I have worked in palliative and end-of-life care and had the privilege of working in many different settings, each providing a different experience and level of understanding. I have worked in hospice, community and acute settings as a clinical nurse specialist and at a regional and national level advising on end-of-life care. Recent experiences as a family carer have led me to better understand the challenges of being a carer and to question the equality of end-of-life care service in practice.
My experience
The call came at midnight on Good Friday 2020: my relative, anonymised to Jim, experienced a sudden acute event and called 999 and then me, as the family nurse. I arrived to find an ambulance crew continuing their assessment and a very frightened older couple. The ambulance crew's default position is carriage to the acute hospital for investigations. However, this is not always the most appropriate course of action. Difficulties in ambulance staff facilitating end-of-life care at home include an emphasis on providing emergency care and perceptions that hospitals are the default place of safety (Hoare et al, 2018). Proactive planning, such as advance care planning (ACP) (National Institute for Health and Care Excellence (NICE), 2011; 2019) and treatment escalation plans (NICE, 2020), are encouraged to prevent such reactive decision making in crises and to ensure that individual choice is respected. In an ideal world, such conversations are had early, with the ‘what matters most’ element (End of Life Care Think Tank, 2020) of every person's care established and people who may be approaching the last year of life identified (NICE, 2011) so that personalised proactive planning can be enabled. However, these conversations often do not happen, and recent evidence showed that just 7% of patients admitted to acute trusts in England had an ACP (Health Quality Improvement Partnership and NHS Benchmarking Network, 2019). Although ACP is ideal, more often, planning is in response to a sudden crisis or an acute event, such as the situation described here.
We had to make a crisis decision with two distinct options available: to go to hospital and investigate or to remain at home. In discussions with the ambulance crew (and all involved health professionals), I identified primarily as a relative but also communicated my professional background. A key factor to consider was the absolute capacity of Jim and his ability to make decisions. We talked and weighed up the pros and cons of both options. To go to hospital would mean separation from a wife of nearly 60 years and little chance of reversibility, given his severely frail condition. The very likely possibility that Jim would die in hospital away from his family was spoken out loud. The other choice would be to remain at home, managing whatever symptoms were presented from a palliative perspective. Jim was clear that he wished to remain at home.
For the next 6 weeks, all our lives changed to revolve around caring for someone dying at home. I moved in to provide nursing care and initiated the steps that I knew were required: fast-track continuing healthcare, referral to the local palliative care team, do not attempt cardiopulmonary resuscitation (DNACPR) decision-making, lasting power of attorney, anticipatory medication, district nursing support, GP input and sourcing basic equipment to deliver personal care. After a week, we had established a package of care, and I was able to go back home and to work. Jim was bedbound for the remaining 6 weeks of his life and, although extremely weak and frail, he retained his brilliant intellect and character. We had a family birthday and precious memories were made. In the final few days, I stayed more often, even though we had overnight care. Jim died peacefully with his wife and both sons present.
Challenges experienced
Caring for Jim highlighted the many challenges that families face. Without my professional knowledge, I am unsure if we would have been able to support Jim to have a comfortable death at home. It was a frustrating and exhausting battle to navigate a complex system that just did not seem to offer a joined-up care experience. By the end, I was left questioning just how equal end-of-life care is in reality. The main challenges can be summarised as follows:
- DNACPR decision-making: the on-call doctor who visited did not appear to have the necessary skill to have a DNACPR conversation, leaving Jim confused and no decision formally made. The doctor had a ‘do you want to be resuscitated?’ approach, with no skills in explaining what the dying process might involve. It took 4 days until the GP phoned and had a more personalised conversation to provide appropriate assurances of ongoing care
- Community care: contacting the various community services was a lengthy and complex process, often requiring separate referrals for the same problems. I naively thought that once we were referred for one problem, we were ‘in the system’, but found that multiple referrals were needed; care appeared to be managed through a reactive, rather than proactive, approach. So much time was spent in making or waiting for calls from different services
- Anticipatory medication: there was confusion among professionals over how to obtain more crisis medications. This resulted in delays in obtaining and receiving appropriate symptom control.
- GP review: no professional involved in Jim's care recognised the need for a GP review after 28 days (British Medical Association, 2020). Just before the weekend that Jim died, I could see he was getting weaker, and he appeared to be entering the last days of his life. As we had received no proactive GP contact, I called and requested a video visit, being aware of requirements for certification of death without a referral to the coroner. My professional hunch was correct, and Jim died that weekend.
- Clear explanations: despite being a nurse with experience in all elements of end-of-life care, this was my first experience as a family carer. At times, I wished that my role could be that of a family member, rather than my having the responsibility of a professional. I led my family through the changes that were happening day by day, what we could expect and the very normal process of ordinary dying. Towards the end, I explained the dying process and told them to expect the longer periods of unconsciousness and, finally, the irregularity of breathing. The discussions resulted in the phrase ‘step changes' entering our lexicon; it was made up by a family member but made complete sense to us all.
Although we wanted professionals to take charge, services worked in isolation and care was often not proactive or joined up. I had to join up care and advocate for suitable support even though I wanted to be a family member first and foremost. The stress on us as a family cannot be overstated, combined with the utter exhaustion and guilt of neglecting other family members. Our experiences were undoubtedly shaped by rapid changes to practice implemented in response to the COVID-19 pandemic. Face-to-face contact with professionals was limited, with a greater reliance on family caregivers, an evolving response that has been challenged by Bowers et al (2020). In a reflection of the unintended consequences of such rapid changes, Bowers et al (2020) suggested that public contribution is needed to evaluate the impact of change and cautioned that care may be system centred rather than person centred.
Lessons learnt
Seeing end-of-life care delivery through the eyes of a relative, rather than a professional, prompted me to reflect on three key areas that combine to shape our personal story. These areas are knowledge, support and finance and are explored below.
Knowledge
From the very first call, I understood that the ‘what matters most’ conversation needed to happen, which set the next weeks in action. I knew what would be needed from an equipment perspective to manage the first few days and was lucky enough to source the basics, which enabled me to deliver care. Moving on from the first crisis days, I understood what care and equipment could be obtained. No professional discussed the carer's allowance or ability to apply under special rules (Department for Work and Pensions, 2020), and this knowledge enabled me to understand how and what could be claimed to support us. Having prior knowledge enabled me to request and put in place proactive planning. Lastly, knowledge of how to deliver personal care and experience of working in the community meant that I could instantly step into the caregiver and nursing role.
Support
As a family, we worked as a team, each with a vital role to play. While I became a nurse, my home life went on hold; the intensity of that first week reminded me of the first few days of becoming a parent-broken nights, constant care and an emotional roller coaster. Without a family sorting out day-to-day practicalities, I would not have had the privilege to provide this care. It really does take a team. During the few weeks of relative stability, all the family team visited constantly, sorting washing and food, cleaning, gardening and providing support. We devised a rota and somehow all managed to work, share caring responsibilities and maintain our own homes. I was further enabled in having the support of my employer during this time.
Finances
The ugly reality is that money really does make a difference. We were allocated four double-handed visits a day, plus two night sits a week from NHS continuing healthcare (CHC). This sounds good, but the remaining 21 hours a day for 5 days a week needed to be covered by us as a family. This can quickly become exhausting for relatives, especially those with limited support networks. The provision of CHC itself is a lottery, with some areas covering 24-hour care at home (Which?, 2020). We found that much more care was needed than was provided by NHS CHC. I was able to deliver most of this, but we were also able to supplement this with privately funded care-a luxury that is not available to all. Fortunately, we were able to afford additional equipment, such as a hospital table, towels and extra bedding.
Before discussing support available to carers, my final thoughts on the lessons I learnt are highly personal: it is impossible to overstate the privilege and value of being able to deliver care. My professional training and experience enabled me to move seamlessly from relative to nurse overnight with no awkwardness or embarrassment on either side. The intimacy of care-giving in the middle of the night set the scene for important conversations, and we spoke of things that mattered, of the future and even of preferred songs for Jim's funeral.
Support for informal carers
One night, lying exhausted in bed and knowing that I would be getting up to deliver care multiple times overnight, I tweeted: ‘I find myself in the position of caregiver at end-of-life care and could never have imagined how difficult this would be.’ The response to this was instant, with people sharing stories and experiences. Overwhelmingly, people wanted honest communication, joined-up services, proactive planning and little things, such as being offered food and drink and a comfortable chair. The additional support that is available to informal carers varies tremendously. End-of-life care provision relies heavily on charity organisations supplementing core NHS care. Some areas have very limited charity services, while others are covered by Marie Curie or local hospice services.
Reflections
The Ambitions for Palliative and End of life Care framework (National Palliative and End of Life Care Partnership, 2015) sets out six aspirations in delivering end-of-life care, the second of which is ‘each person gets fair access to care’. Acknowledged in the framework are members of the population who experience inequities and inequality in the provision of palliative and end-of-life care; these include those living in rural communities, people with learning disabilities, the LGBTQ+ community, people experiencing homelessness and prison populations. More recently, a Marie Curie (2020) review of the barriers to good end-of-life care also highlighted the vulnerability of people from ethnically diverse backgrounds, those from low socioeconomic backgrounds, older people living alone and people living with dementia. The review suggested improving both the personalisation and support of services and highlighted the need to address deficits in social care (Marie Curie, 2020). From experience, I have learnt that knowledge, support and finance can be important contributory factors in end-of-life care. These all make a difference, and I would argue that, in our case, the story would have been very different without these combined elements.
Conclusion
Stepping into the role of a relative and caregiver in end-of-life care provided me with a unique window into a world I thought I knew well. It led me to question previously held assumptions and identify potential barriers to the provision of end-of-life care that are uncomfortable to consider but important to raise. We need to be mindful of how difficult families find it to navigate complex healthcare systems. Community nurses can play an invaluable role in explaining what support is available, exploring patient and family concerns and joining up care.