“Of all the forms of inequality, injustice in healthcare is the most shocking and inhumane.” Martin Luther King Jr
San Francisco is a city of contrasts. In the misty shadows of the high-rise monoliths of the financial district there is a scattering of human debris, the homeless population of the city. They are everywhere – south of Market Street are rows of tents and temporary structures.
With estimates ranging from 2-5% of the population, the number of people living on the streets here exceeds that of most cities in the so-called developed world. Each year hundreds of people die on the streets of San Francisco.
Life expectancy here for those who are homeless is between 42 and 52, compared to 78 for the general population. It has been estimated that around a third of homeless people in the Bay area are over the age of 50.
When medical problems arise, homeless people tend to go to the emergency room at the nearest hospital as many do not have a primary care physician. These visits are usually followed by a rapid discharge and the majority of follow-up appointments are not attended.
San Francisco is also one of the world’s most expensive cities, although I am told that this is not the sole reason for the scale of the homelessness problem.
It has resulted from a combination of radical health policy changes in the 80s, for example the widespread closure of state-run psychiatric institutions with limited plans for integration or ongoing support for the residents. The temperate climate of the West Coast is another reason for people to move here to live on the streets – although chilly at times, it is generally dry, as attested to by the cardboard dwellings that line many of the streets south of Market Street.
Many of those living on the streets have mental health and/or addiction problems – both issues which are known to lead to inequalities of access to supportive care.
Medicare hospice benefit is provided for those who have a prognosis of six months or less – but this requires that the person has seen a physician and received such a prognosis, and many people do not access healthcare at all.
For those without health insurance, dying can be a very different experience. Although free services do exist, such as the San Francisco VA Health Care System (which offers a free geriatric clinic for war veterans), the majority of the homeless do not access regular healthcare and there is an unmet need for those who are homeless who are not veterans.
Zen Hospice do not turn away anybody on the basis of limited finances as long as they have space, and care for around 300 patients annually.
However, the number of those who are in need of palliative care is far higher. The legacy of AIDS – although considered to be more of a chronic condition than a terminal illness – remains, concentrated in areas with high rates of homelessness such as the Tenderloin District.
One doctor told me about some time she had spent volunteering at a Greek refugee camp. She felt that the homeless of San Francisco are worse off, in many ways, than some of those who she attended to, despite their history of escaping from unspeakably traumatising experiences in their countries of origin.
“At least many refugees are getting input from NGOs and from a range of services – health, advocacy, social care, political support. Back home in California, in the midst of all this wealth, there are so many people dying alone and unsupported. They are largely rejected from our society that prides itself on democracy, freedom and justice.”
Although Medicaid exists to provide support for those on low incomes and does cover some palliative care interventions, it does not recognise the term ‘palliative’ so the conditions of reimbursement are the same as for other health interventions. Often, palliative care services require that the patient shares the costs of the intervention, which can be prohibitive.
The hospitals I have visited so far are high-tech sparkling institutions, testament to progress and medical advancement. In one of the dedicated palliative care comfort suite rooms, ceiling-height windows offer a panorama of the cityscape and the large room includes comfortable bedding for family members wishing to remain by the side of their dying loved one. Those patients receiving palliative care are reviewed regularly by the expanding team – opioids are titrated and rotated, intravenous fentanyl, oral methadone, there are long debates about conversion factors, half-lives and tolerance.
For those patients lucky enough to have health insurance, this setting offers a high level of symptom management and rapid access to a range of professionals, from spiritual care coordinators to social workers. There are also a range of outpatient clinics and in-home palliative care service providers such as Bridges, provided by UCSF’s palliative care team.
The situation has improved since the United States passed the Affordable Care Act in 2010, but many inequalities in access remain, coupled with a lack of consensus as to what palliative and hospice care mean, and wide variation in the nature of services across settings.
For those people in the Bay area without health insurance, Medicaid has been fundamental in improving access to palliative care for people with recognised disabilities, as Medicare has been for those over the age of 65.
The majority of palliative care is delivered in the hospital inpatient setting, where cost benefits can be proven. As yet there is no coordinated palliative care service provision for people who are homeless, although respite programmes and key worker programmes do exist to support the most frequent emergency room attenders.
Last year, the San Francisco Palliative Care Task Force reported on current service provision in the Bay area, which appears to reflect wide choice in providers for palliative care across a range of settings. The variety of providers reflects some lack of clarity in definitions of what constitutes palliative care and whether, for example, a person might be able to receive palliative interventions alongside curative treatment if there are significant problems with symptoms or psychosocial concerns.
Medicare and Medicaid do not clarify what is meant by palliative care and so there are frequent disputes about what is covered for older people approaching the end of life. Care at home is not covered by these schemes, and nursing facilities are expensive, so the vast majority of people dying at home usually rely on informal care.
It seems to be an ill-conceived notion that Medicare and insurance will pay for expensive chemotherapeutic regimens but not for care that enables people to remain at home to die, or to provide access to comfortable and dry surroundings for a homeless person to spend their last days in safety.
This article was first published on Laura’s own blog (Impermanence – Reflections on compassion in end of life care) and republished here with permission.