I arrived in San Francisco on Sunday for the first part of my Florence Nightingale Foundation travel scholarship, and this week have been orientating myself to the Bay area and the services that are provided here for people approaching the end of life.
So far, this has taken me to visit Hospice By The Bay (HBTB), the Zen Hospice, and two days with the palliative care team at UCSF. My abiding sense is of the universal challenges that are facing palliative care on both sides of the pond. Molly Bourne, CMO of HBTB, tells me that the demographics of the populations served by HBTB has changed in recent years from one largely comprised of people with cancer and AIDS-related illness, to a population comprising primarily of people with Alzheimer’s disease and other dementias, coronary heart disease and respiratory problems such as COPD. This shift in demographic brings challenges that are only too familiar to us in the UK; resource-limited specialist palliative care teams can no longer provide services directly, and new and creative ways to reach out to all must be developed. Joint working with primary physicians and teams is a goal, although often once a person is considered to be eligible for hospice care primary physicians often take a back seat in care. This sometimes relates to concerns about lack of experience or confidence at symptom management and the use of strong opioids and anxiolytics. To this end, the HBTB team seek to maintain involvement of primary physicians through continued contact with them relating to their input. Joint visits are emphasised, where the consultations have an educative as well as direct therapeutic function. The same is true for the hospital palliative care team; joint visits enable and empower the generalist palliative care providers. The team are well aware that they only see a small proportion of all those who may be eligible for palliative care, and as in the UK educating the other care providers in the hospital is essential in order to extend the reach of the relatively small team.
Terminology relating to end of life care appears to be less fiercely contested here than in the UK. Palliative care is taken to mean the approach to care that may be taken at the point of diagnosis that aims at enhancement of quality of life. “Hospice” describes the care that is provided for people who have an estimated prognosis of less than 6 months. Interestingly, it refers to the approach to care rather than to the building itself, as it is more generally understood in the UK. Thus it is possible here in the US to receive “hospice” care from a provider whilst living at home or in a facility such as the Zen Hospice. End of life care is considered to be the provision of comfort care in the last hours and days of life – as opposed to in the UK, where the End of Life Care Strategy marks out the last year of life as being “end of life”.
The Hospice By The Bay team describe their approach as “transdisciplinary” rather than multidisciplinary. The literature often blurs these terms, yet there are important distinctions. In the UK, the emphasis is upon multidisciplinary care, in which professionals from different disciplines each provide input related to their role. These roles are not considered to overlap. Frequently the input takes the form of multidisciplinary meetings where this varying input is coordinated, often by a key worker. In contrast, transdisciplinary care is seen as a single team comprising various members who cooperate across disciplines to ensure the provision of optimal care for the patient. This latter approach works well for the diverse team at Hospice By The Bay. Dr Molly Bourne tells me that it sometimes means that a physician will provide personal care, or a social worker may discuss the use of medications. This blurring of disciplinary edges is essential for a positive patient experience, in Molly’ experience. Certainly, the evidence appears to suggest that new collaborative models of care are effective in areas such as Alzheimer’s care with optimisation of shared decision-making and involvement of patients and families in discussions about their care.
In the case of the hospital palliative care team at UCSF, disciplinary boundaries are somewhat more clearly marked, reflecting the difference in the context of care provision. I am struck by the very different role of nurses here. Dr Steven Pantilat gives me a potted history of the hospital palliative care team, which began with a handful of medical, chaplaincy and social work professionals and only acquired a nurse two years ago. The role of the nurse is still evolving; Susan, the current nurse specialist on the team has a history of working with the wound care team and capitalises on this experience to monitor the hospital’s wound care service to identify patients potentially eligible for palliative care who may not have been referred by their own physicians. Social workers are key to the success of the team’s input. The two palliative care teams each have their own social worker whose role includes psychosocial support, coordination of care and facilitation of discussions around advance care planning. The role of nurse practitioners is also evolving; a student NP is spending part of her training with the team. Once qualified, she will be able to prescribe under physician supervision for a broad range of patients with palliative care needs.
One key difference between end of life care in California and the UK is the recent legislative change regarding assisted dying in June 2016. The law in California relating to physician-assisted dying features strict regulations to ensure safeguarding, such as requiring the agreement of two physicians that the patient has a prognosis of less than six months, is of sound mind and wishes to end their life. The palliative care teams had anticipated a rush of requests for AD but this has not yet materialised – Hospice at the Bay report that only one person known to them has pursued AD. They made a decision as a service that they would not act as primary prescribing physicians for lethal prescriptions, but in some cases would consider being the secondary signatory.
Although the topic is often raised in conversations with patients and their families, it is more often in the context of voicing their fears and concerns about being a burden, or of losing their dignity – both of which are commonly encountered worries for people transitioning to palliative care, and for many palliative care professionals would not constitute “intractable” suffering. Globally, many objections to physician-assisted suicide have come from within the field of palliative care, with professionals seeking to distance themselves from the issue and regarding the core values of palliative care as being antithetical to assisted dying. However there is some dissent here -the priority in palliative care is to maximise quality of life and to enable a good death, whilst the etymology of euthanasia literally means “a good death”. These issues are not as diametrically opposed as it may first appear, and professionals here are well aware that they may need to address this issue with patients and families with increasing regularity.
At the core of this debate is the issue of suffering. Intractable suffering is frequently cited as a primary reason for people to seek physician-assisted death. Yet it is rare for this to relate to physical symptoms, and the experiences of people in Oregon reflect concerns that are more psychological or social in nature, such as fearing being a burden, or losing one’s dignity. Easing the load and dignity-enhancing treatment are central to a palliative approach – one reason that physician-assisted dying is seen by many within palliative care as antithetical to its’ core philosophy that seeks to enhance quality of life and not to hasten death.
My visits this week have included a diverse range of settings in which palliative care is provided, from the comfort and harmony of the Zen Hospice, to a strategically-placed mattress beneath a tree at the edge of Golden Gate Park on which a homeless man is curled, asleep. This city is comprised of diverse communities with varying needs, and the inequalities in access to health services are wide. Yet the provision of palliative care is also diverse, enabling a broad range of people with very different diagnoses to receive holistic and transdisciplinary care.
Tomorrow I will visit the Memory and Ageing Centre to find out more about palliative care for people with dementia, and next week I will be meeting with nursing teams at the hospital to find out more about their role in comfort care.