Same same, but VERY different
✈️ After a month in wonderful Canada, I bid farewell and headed south to California where I had only a couple of meetings planned following limited uptake to my requests to engage. Both offers that came to fruition were from people connected to palliative care - one independent palliative care physician and another offer from a stand alone inpatient hospice facility, each in different parts of the state. The contrasts between the two North American countries - US & Canada - are innumerable, in many ways, not least of all the approach to and perspectives on assisted dying.
🚉 Flying into San Fransisco, I took the train across the bay to Berkeley and was overwhelmed by the very obvious homelessness on view, particularly through the neighbouring city of Oakland. Perhaps my privileged, sanitised life just doesn’t expose me to what is also prevalent in Western Australia, but it was pretty shocking here and very sad to see. My lovely Air BnB host and the Berkeley-based clinician I met with both informed me, with considerable sadness about the impact that the COVID pandemic has had on the region in exposing both the health system barriers (particularly in regard to mental health services), and the ever-increasing socio-economic divide. California is home to some of the most expensive US cities to live in the country, number 3 on the list being Oakland. I’m also pleased I hadn’t read about the considerable crime rate in Oakland before arriving! I didn’t venture there much, but had to pass through several times.
Some of this socio-economic context has helped me understand the predominant experience in the US, or at least California, that is also echoed in international assisted dying literature, that the majority of people who access it are white, middle-class, educated and often affluent folk. I don’t think I’m alone in feeling our experience in Western Australia does not reflect this international trend. Whilst various demographic data is collected by practitioners and the VAD Board, there is not yet published data or research to confirm trends in this regard in Western Australia. However it stands to reason that a nation such as the US, without a universal health care system and where access to even basic health care can be challenging for many, is likely to reflect variable access and uptake of what is still a ‘niche’ end of life care option about which many are still not even aware. (The nuances of funding and costs of assisted dying in the US are a whole other conversation.)
The Californians use the slightly cumbersome acronym ‘EOLOA’ rather than MAiD or VAD when referring to assisted dying, to reflect their respective legislation the End of Life Option Act, 2015. This and similar laws in the 10 US states where they exist (one additional state has de facto assisted dying protections), prohibit the direct involvement of any person, health professional or otherwise, in delivering life ending medications. The laws and/or protections allow for prescription of lethal medications following assessment against eligibility criteria that are broadly similar to Australian criteria, but a person necessarily needs to be able to self-administer. For those without the ability to absorb enteral medications, the preferred option in the US is rectal administration, which still must be done by the person themselves. This of course raises the question of the barriers for those who are losing or have lost manual dexterity or use of upper limbs.
I observed some very interesting responses to discussions about comparative process between the US and Australia. Several people felt the need to clarify that IV administration of assisted dying medications was indeed euthanasia, and I was sometimes aware of undertones of disapproval or discomfort in this regard. When seeking to clarify, on behalf of some of my VAD colleagues in Australia, whether people ‘miss out’ on access to assisted dying because of the need to self-administer, the answer was unequivocal - yes. People such as those with MND (ALS is the preferred term in North America) either miss out, or have to administer earlier than they otherwise might, to ensure they still have the physical ability to prepare and ingest their own medications without assistance.
There did not appear to be much evidence of centralised coordination or access points for EOLOA, other than advocacy groups like Compassion and Choices and Death with Dignity. ACAMAID (American Clinicians’ Academy on Medical Aid in Dying) is a fairly young, but growing organisation with origins in California, that arose in response to the need for shared education, professional support and best practice guidance among professionals working in assisted dying. It now also serves as a referral point for people seeking EOLOA to be referred to a participating clinician in their area. One of the larger health providers in the Bay Area, Kaiser Permanente, which seems to service a significant proportion of the Berkeley-Oakland area, do have a team of ’nurse educators’ whose role is to inform, guide and support Kaiser patients through the EOLOA process. But this service is only available to those who have existing health care (ie: insurance) connected to the Kaiser group of services. It’s a complicated beast to understand how people might access many parts of care in this system.
(NB: I have a deferred online meeting with the manager of the Kaiser educators scheduled after I return to Perth.)
ACAMAID also serves as the American equivalent of a Community of Practice for professionals working in assisted dying. The group is also open to and discussion threads frequented by a good number of death doulas. The prevalence of their posts on the ACAMAID forum over the past year had me believe that doulas were becoming ubiquitous in assisted deaths in the US, but none of the health professionals I met or spoke with had used one or knew of any. Perhaps it’s a group of people the lay public engage in trying to navigate what seems to be quite an opaque system and process. These are merely my postulations, not actual observations.
🚙 After an afternoon of obligatory wine tasting at a couple of ‘urban wineries’ - no time for a visit to the Napa Valley - complete with a turbid rosé (that was not to my liking), I picked up my ‘compact class’ hire car (yes, that’s my bloody people-mover you can see there! It had sliding doors for all the kids to be able to pile into the back before I take them to soccer!) and hit the road. My hopes of driving some of the Big Sur weren’t totally thwarted. Large swathes of the coastal road remain closed after landslides in the winter, as apparently occurs not infrequently. I gather it would have taken me in excess of 11 hours for my entire journey had it all been open, so probably a blessing.
Despite the fog and low cloud, it was still spectacular coastline and a breathtaking drive (breath-holding, at times!) I’m quite sure I’d have felt much more relaxed in the ‘compact class’ vehicle I had booked! A hairy drive, lunch with a friend and then me and my family-wagon headed south to Santa Barbara.
I was invited to visit and meet with a multidisciplinary group in Santa Barbara who work both in the community and in the inpatient hospice, which is the only hospice in the region to support assisted dying on site. Serenity House is part of a broader health care provider, but uniquely is available to all comers, with or without insurance and at no cost. It was absolutely beautiful inside and set in a spectacular location nestled on a hillside with views that I imagine would also be spectacular on a clear day. They had a beautiful contemplation room that housed a range of interesting memorabilia from Elisabeth Kübler-Ross.
Many hospices in US states that allow assisted dying on-site have policies of not allowing staff to remain in the room if a patient is ingesting their prescribed medications. In contrast, Serenity House supports people throughout the process and staff, willing volunteers and the site chaplain are all at liberty to remain with a person while they ingest, if that is their preference. There was obvious pride amongst the team in the supportive approach of this secular facility and the relative freedom afforded both patients and staff to determine their choice.
Likely the most shocking revelation of this visit was discovering that under the US health insurance schemes, people cannot continue to receive funded treatment, such as chemotherapy, radiotherapy etc if they wish to receive palliative care service support. I was totally shocked! Health insurers simply will not fund both ‘treatment’, regardless of intent, and palliative care services, so individuals are forced to draw a line in the sand if they wish to engage the latter. It is quite simply, one or the other. Not for the first time I was relieved to live and work in a country with universal health care, for all its other challenges.
Next stop - New Zealand.
Tip of the day: do not attempt to sightsee while driving on the wrong side of the road, from the wrong side of the car, along a cliff-edge…not least of all because nobody wants to learn how to navigate international health care systems if they survive such an adventure!
Comments