End of Life Care – Day Two – Finding the Patient’s Pigeons

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Dec 16, 2016
by Louise Hallman
End of Life Care – Day Two – Finding the Patient’s Pigeons

Second day of palliative care session considers how to best meet patients’ needs and preferences and support their caregivers and families

End of Life Care – Day 2 – Finding the patient’s pigeons

On the second day of Rethinking Care Toward the End of Life, panelists from the US, Singapore, Canada, Uganda and the UK considered: how do we engage patients and families to ensure that end of life care honors what matters most to them?

Not all patients want to live at all costs. Many want to enjoy what is left of their lives. “Death is not always a failure” of medical care, remarked one panelist. “We are so afraid of death that we harm people” by keeping them alive.

One panelist shared an anecdote of a prize-winning pigeon fancier in Scotland who was told by his doctors that he would live longer if he gave up his sport and his birds. His daughter, upon showing the visiting doctor her father’s collection of pigeon racing awards and prized birds, clearly stated: “My father would rather die than give up his pigeons.” When considering a patient’s – or rather a person’s – end of life care, clinicians and families need to consider what actually matters most to the patient, and add life to their days and just days to their life.

Patients and their families need a great amount of help and support toward the end of the patient’s life. Too often, palliative care specialists are brought in so late that neither the patient nor their families have a relationship with these new doctors. Developing a good relationship with patients and families depends on good communication. In countries where multiple languages and dialects are spoken, every opportunity should be made to ensure patients can access information and express their preferences in their mother tongue.

As one panelist identified, there are three opportunities to communicate well with patients and their families. Firstly, before they are even sick. Providing people information about end of life care choices when they are still well could help reduce the anxiety and distress of terminal illness and the taboo and fear surrounding death. “Death is a stage of life,” added another participant.

Secondly, during illness; medical options and alternatives to medical interventions need to be clearly communicated so that patients can partake in the “shared decision-making” process about their care.
And finally, after death; sensitive, ongoing communication with bereaved families can help further learning and improve systems for future patients.

Cultural understanding was also highlighted. Different faiths and cultures view death differently, and offering patients and their families spiritual as well as medical and community support can be of great help.

Meeting the preferences of those who can no longer express them

“Next week will be worst week for palliative care specialists!” exclaimed one panelist in the fifth and final discussion of the second day of Rethinking Care Toward the End of Life.

As he went on to explain, the coming week will see many far-flung family members come home for the holidays and visit their loved ones in palliative care units, hospitals and hospices – bringing with them entirely different opinions about the patient’s care.

Patients may have clear ideas of how they wish to spend their final days, however, these wishes may not be shared with their immediate next of kin, direct caregivers or wider families, prompting fierce debate on how best to treat the patient if and when they become incapacitated and unable to express their own preferences.

As one participant pointed out,  offspring of incapacitated parents often feel it is their duty to keep their ailing parent alive as long as possible – even if this is of great discomfort to the patient. Keeping their parents in an expensive hospital, rather bringing them home to die in familiar comfort, can also be seen as a sign of respect.

Some countries, such as Singapore, have passed laws that enable people (sick and well) to outline their preferences in “advanced care directives,” detailing whether they wish to be intubated, resuscitated, kept in hospital, brought home, etc. Such “living wills” can help avoid clashes between patients and their families.

Another way to mitigate against such divergences in preferences would be to have frank, open and honest discussions between family members about what care we want at the end of life – even before we get sick. By discussing these underlying general values during wellness, caregivers and families can be better placed to make more specific decisions during illness – and be reassured that they are carrying out their filial duties.

Children (i.e. minors) who are terminally ill have their end of life care decisions legally entrusted to their parents. Palliative care providers need to be especially sensitive in their communication with young patients and not simply assume that they are too young to understand or be able to express any preference. “We need to upgrade our communications skills as often as we upgrade our clinical skills,” pointed out one participant, a pediatric palliative care specialist.

Much of the discussion surrounding palliative care focuses on cancer patients and their pain management, however there are many more patients who have end of life needs. As our populations age, dementia is increasing, bringing with it complex care needs. Often dementia patients do not wish to disclose their diagnosis to family members, lest they view and treat them differently. Despite their declining health, dementia patients should still be included in decisions about their care, with questions focusing on their emotional, rather than simply medical, needs.
 

(Palliative) care in the (online) community

How can we support patients and families within their communities?

If enabling people to stay in their homes and communities is preferable to dying in a hospital, how can this be best supported? While patients may want to die surrounded by their loved ones, not all families are prepared for or able to carry out this care-giving role. Support and care needs to be offered to the caregivers as well as the patient to help them fulfill this role. We also need to acknowledge that caregivers might not be the next of kin or even a family member.

One tool that has been developed to help patients and their families is the “Virtual Hospice” in Canada. The first online platform of its kind in world, the website offers practical advice and instructional videos on such things as how to lift patients in and out of bed. These videos reduce strain on local nursing resources, often called out to demonstrate the same skills repeatedly, and offer an immediate source of information to families in need. “People are saying ‘I no longer feel alone’ to a website,” explained one panelists, demonstrating how online communities can be a powerful and supportive resource.

While no participants were advocating for the replacement of in-person care with virtual assistance, online tools can help “plug the gaps” in care provision – especially for rural communities. Developing these tools necessitates active listening to identify where those gaps are.

<font color="#0066cc"><a href="/fileadmin/user_upload/Documents/2010-2019/2016/Session_562/Day2_SalzburgGlobal_562_End_of_Life_Care_Newsletter.pdf" title="Initiates file download" class="download">Download the full newsletter from Day 2</a></font>


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.