Participants consider successes and failures in adapting to cultural variance, making the most of sparse resources and supporting marginalized communities on the third and fourth days of the End of Life Care session
“If we want to learn from failure, we have to share our failures,” urged a participant on the third day of the Salzburg Global Seminar session Rethinking Care Toward the End of Life.
Recognizing that we learn more from our failures than we do our successes, panelists from four continents shared their countries’ experiences.
One failure that needs to be overcome is the belief that death is always a failure – this is not the case in palliative care, especially when that death is in comfort rather than living in prolonged pain. As one panelist remarked, many life-prolonging treatments are “futile.”
Although the UK is often lauded as one of the best countries in the world for palliative care, as one British participant remarked, if she were to rebuild a system from scratch, she would have one piece of advice: be more strategic. Many of the UK’s hospices, especially for children’s palliative care, have been established in an ad hoc fashion over several decades, leading to questions of whether these are being used most efficiently in the places where they are most needed.
Fragmentation of services and health insurance is a problem, even in long-established palliative care systems, with patients falling between the cracks of hospital, hospice and home care.
However, one should not assume “strategic” means that the palliative care system should only be built once all other care systems have been fully established; palliative care systems should be built alongside and integrated into the rest of the health care system, not simply “added on” later. If palliative care can be integrated, this can strengthen the system at large, remarked on participant, with doctors and nurses carrying over their learning in pain management, communication, etc., into other areas of medicine.
Another example of what not to do came from the US: In order to receive hospice care under Medicare, patients must have been given a prognosis of less than six months to live and agree to stop pursuing all other curative treatments. As few doctors are willing to give such a prognosis, many people are ineligible for hospice care. “We should not have put a prognosis requirement on palliative care,” lamented an American participant. “Palliative care access should be based on symptom severity,” he added. Many palliative care systems have been put in place assuming that palliative care is only for the end of life, when indeed palliative care models can also be applied at other stages of illness, perhaps even aiding a recovery.
Transplanting a palliative care model from one country to another without appreciating the local cultural sensitivities surrounding death and end of life care, is rarely successful. In India, once palliative care is offered, patients prefer to leave the hospital and die at home rather than transfer to a hospice. However, national health insurance does not cover this, forcing institutionalization. Whereas, in Nepal, many choose to die in temples to have a holier experience, leading to the question of how can these informal hospices be brought into the wider palliative care system?
ECHOing innovations
To drive improvement in health care we need evidence. “In resource poor settings, it is even more important to generate evidence of effectiveness,” said one panelist in a discussion of “which are the most promising evidence-based and cost-effective innovations in end of life care?”
Health care outcomes should be measured from the point of view of those using it, another participant remarked, and in the case of palliative care, that means not only the patient but also their families and caregivers.
One such measure that has been developed is the African Palliative Care Association (APCA)’s African Palliative care Outcome Scale (POS). The POS addresses “the physical and psychological symptoms, spiritual, practical and emotional concerns, and psychosocial needs of the patient and family.” Using the POS, medical staff are able to help reduce the patient’s pain and anxiety and increase family confidence in the patient’s care over a series of hospice visits.
Pain relief can be the most effective measure of palliative care success, but in many countries, staff are not sufficiently trained or the number of doctors who are trained is few. One solution is to train and empower nurses to prescribe and administer pain relief.
Once evidence has been gathered, sharing this knowledge is important, not only through training and journals, but also by using innovative tools such as “Extension of Community Health Outcomes” – ECHO – which is a “telementoring” (“not telemedicine”) platform, enabling doctors and patients across diverse and remote geographies to connect virtually in large video tele-conferences, sharing their experiences across a wide community of practice.
Care at the margins
If palliative care is about making sure that all people have the chance of a “good death,” then how do we ensure this is all people – including society’s most marginalized?
Marginalized people struggle to access health care services in general, and palliative care is unfortunately no exception. These patients can be hindered by cost barriers, social stigma, or a lack of health literacy.
In many cases, despite knowing these barriers exist, health care systems are failing to serve such patients. Providing care for free (or included in insurance) rather than means-testing can reduce the cost barrier to at-home palliative care, especially for those without family support. Active outreach to the homeless is also vital. In countries where homosexuality is still illegal, access to palliative care can be especially difficult for the LGBT community; social stigma needs to be tackled. Prison populations are aging rapidly; continued incarceration of the elderly will necessitate significant changes in prison conditions.
For those in conflict zones, palliative care is often not considered a priority. For those fleeing conflict, they may find themselves in a country with profoundly different approaches to end of life care and death. Issues can arise when considering how to be culturally sensitive while still avoiding more harmful traditional practices, such as witchcraft and superstitions, but when and where appropriate and possible, host countries should be cognizant and respectful of the cultural differences of their refugee and migrant populations.
Download the full newsletter from Days 3 & 4
The Salzburg Global Seminar session Rethinking Care Toward the End of Life, part of the long-running series Health and Health Care Innovation, is being held in partnership with the Dartmouth Institute for Health Policy & Clinical Practice and the Mayo Clinic. Follow online on Twitter with the hashtag #SGShealth.
