“You call this progress, because you have motor cars and telephones and flying machines and a thousand potions to make you smell better? And people sleeping on the streets?” Howard Zinn, Marx in Soho: A Play on History.
Approaching the Laguna Honda Hospital and Rehabilitation Centre facility in the heart of San Francisco one evening, I transition from the bustle of the municipal bus station to an almost empty car park. The only signs of humanity in the vast parking lot are a cluster of people in wheelchairs on the broad bricked path to the entrance lobby.
As I get nearer, I see that one of these people is a bilateral amputee, one leg taken off below the knee and the other above. He manoeuvres his wheelchair deftly, expertly. He’s getting used to it, even though the bandages on his stumps suggest this is a recent event.
An elderly woman with wide eyes calls out, holds a craggy finger up to me, mutters something incoherent. I smile at her and ask if I can help. “She’s crazy,” says one of the others. “She just wants you to take her home but she ain’t got no home ‘cept here.”
I hurry onward to the sparkling lobby of the facility and sit and wait to meet Anne Hughes, the clinical nurse specialist on the 60-bedded palliative care programme here.
Since the changes to Medicaid have opened up the palliative care available to those with disabilities or low income, the palliative care community here rarely has vacancies, such is the demand.
Unlike many British hospices, the criteria for admission do not specify prognosis – one resident with a disabling neurological condition has lived here for over eight years. People can be admitted as long as they are deemed to have “skilled nursing needs”. Laguna Honda is not registered to provide hospice services as such.
Around a third of residents have cancer and the others a combination of neurological conditions and organ failure. Around a quarter of residents do not speak English, coming from either Chinese or Spanish-speaking communities. Around a quarter of the beds are made available for people who are “close to death”, meaning that they are thought to be in the last weeks of life.
There is one attending physician, a specialist in palliative medicine, supported by Anne Hughes, an experienced palliative care nurse and a large nursing team trained to provide expertise in end of life care.
Residents are admitted from a range of places but admissions from home or from the “safety net” Zuckerberg Hospital are prioritised as these tend to be the patients who are most in need. Anne offers outreach support for palliative care needs for the 60-bedded AIDS unit located in another part of the facility, and to any other areas in Laguna requiring palliative care input.
On my way through the unit, a man waves cheerfully at me. He has an oxygen tank tucked down the side of his lap and a blood pressure cuff protruding from his sleeve. I introduce myself and he does the same, smiling broadly.
I am struck by the sense of community here – people here are referred to as residents, not patients, and they often eat together or sit together. For those who have come here from the streets, this place becomes the home they have not had, and they can stay here until they die.
Most residents do remain here until they die – again, this differs from many hospices in the UK where admissions tend to be relatively short, and around half of hospice patients are discharged or transferred elsewhere.
Laguna Honda has a ‘NODA’ policy – “no one dies alone”. A network of volunteers are available to sit vigil with any residents who are spending their last hours without family or friends by the bedside. This is a relatively common event, particularly for residents who have been homeless, have experienced problems with drugs or alcohol, or who have mental health problems – or (as commonly happens) all three.
A framed Zen quote on the wall of the volunteers’ room reads “a life of one day is enough to rejoice”.
Anne speaks often about palliative care for people who are homeless. She did her doctoral project on nursing and palliative care in the urban poor. She was curious to know what dignity meant to people with advanced illnesses, and interviewed 31 people living with cancer, AIDS, or both. Around two thirds of her participants had histories of homelessness or substance abuse, and around 75% were non-white. Her literature review identified that, in 2003, around a quarter of San Francisco’s families were considered to be below the poverty threshold.
There are numerous issues that impact on the quality of palliative care, such as late diagnosis. Around a quarter of cancer diagnoses at UCSF are made during a hospital admission, suggesting poor access to screening programmes, high prevalence of lifestyle cancers not screened for such as lung and liver cancer, and presentation through the emergency room with acute symptoms.
San Francisco’s neighbourhoods are sharply demarcated, and those districts in which many of the poorest live tend to have greater pressures on services. Furthermore, a study by Morrison et al in 2000 found that pharmacies in poor urban areas characterised by a high proportion of non-white residents were less likely to stock controlled drugs such as morphine.
An exception to this is the Castro, which features two hospice services – Coming Home and Maitri – which were established during the AIDS epidemic of the 1980s and continue to provide support, although now predominantly to people with illnesses other than AIDS.
Anne and I talk about vicarious traumatisation and compassion fatigue, and the urgent need to address this in those working with people approaching death. Many nurses here are from the Philippines, and this has created an informal network of support which is also a valued community of learning and practice.
I reflect on recent changes in the UK that saw some community palliative care teams transitioning to “agile working”, and I wonder what the longer term consequences of this might be in terms of unquantifiable aspects of peer support – sharing a cup of tea after a difficult visit. In dispersed teams where this visible team dynamic is reduced or absent, the importance of other means of support become particularly valuable – such as the literature produced for staff by the Irish Hospice Foundation.
The staff at Laguna are trying hard to create an environment in which the homeless can have a home, and the suffering can be comforted. Both the paid and the volunteer workers confront challenges daily and continue to strive towards creating a compassionate community in the face of inequality and injustice.
Many of the volunteers are allied to the Zen Hospice, and as such undergo training and support in how to support a dying person, and how to look after oneself. Frank Ostaseski, founder of the Zen Hospice, suggests five precepts for cultivating presence at the bedside of the dying:
- Welcome everything. Push nothing away.
- Bring your whole self to the bedside.
- Don’t wait.
- Find a place of rest in the middle of things.
- Cultivate “don’t know” mind.
As I leave Laguna Honda, the sun is setting over the misty skyline of San Francisco. There are still a cluster of people in wheelchairs. One man has positioned his chair beside a large, sleek black car with a personalised license plate. The driver of the car hands him a small package which he swiftly pockets, and wheels himself back to the foyer.
The diverse problems Anne identified do not disappear when a person comes under the care of the services, and the nurses on the unit often struggle with issues such as drug use, particularly on the AIDS unit.
I walk back to the Muni, past the shadowy occupied doorways, the shouting shuffling people huddling their clothes tightly against the evening chill. I wonder to what extent we can call ourselves a civilised society when even in the last weeks of life there are people with nowhere to call home.
The French have a saying, one of my favourites, of being “bien dans la peau” – it means to be “good in your skin”, or as I see it, comfortable wherever you are. Palliative care here seems to be about much more than controlling symptoms. It is viewed as an opportunity and a means of offering dignity and respect to the dying, of preserving and sustaining personhood, and of staying close and doing nothing.
This article was first published on Laura’s own blog (Impermanence – Reflections on compassion in end of life care) and republished here with permission.