Palliative Care – a Human Right – so apparent during COVID

Deaths from COVID-19 are approaching 3 million world-wide. Much of the discussion about ethical issues has centered around the availability of ventilators, but little has been said about the need and the responsibility to provide palliative care, ways to integrate a palliative approach for those who are seriously ill, and how to best support those who may or many not get (or want) a ventilator.

In Ontario palliative care specialists helped and provided care in the long term care facilities hardest hit by COVID. But specialist cannot do this in isolation.

In the Journal American Medical Association, article titled, “Integration of Palliative Care into All Serious Illness Care as a Human Right” Rosa, Ferrell and Mason wrote:

“COVID-19 has highlighted that every clinician needs knowledge and skills in the fundamentals of palliative care.“

Palliative care is not dependent on life-saving interventions. It may very well include a ventilator, but it is ultimately structured around the individualized wants and needs of the patient. It includes alleviating suffering and managing complex communications, psychosocial dynamics, fluctuating symptom management needs, and spiritual care throughout the dying process.

Every patient treated with a ventilator also needs palliative care. It is not an either-or clinical proposition, but rather a both-and moral imperative.

COVID-19 has accentuated the need for clinicians to have frequent conversations with patients and families about dying. The pandemic has forced many healthy people to confront rapid-onset, life-threatening trajectories of acute illness. Patients are dying without their loved ones, and families are grieving alone. For every person who dies, an average of 9 others are profoundly affected and grieve.2 COVID-19 has interrupted the cultural and community practices for coping with death, raising concerns about the pervasiveness of grief and loss associated with the pandemic…. 

Access to palliative care is a human right. Our inability to deliver it in the setting of COVID-19 and other serious illnesses is a human rights violation. Education… is needed now.

Personal Support Workers and nurses (both in field and in training), like all health care providers, need the tools and foundation to know how to support individuals living and dying with COVID-19 or living and dying with any life-limiting illness. Now.

The Right to Palliative Care

We just attended the Hospice Palliative Care Ontario 2016 Conference in Toronto. Wonderful event with nearly 800 attendees.

Much talk about PAD (Physician Assisted Dying) or MAID (Medical Assistance In Dying). The following day there was an interesting opinion piece in the Globe and Mail by Dr Tom Koch, a gerontologist and ethicist, who provides chronic and palliative consultations. The title of the article, “The next court challenge, the right to better care“.

Koch asks the question, “If the Supreme Court decision enshrines choice as a principle of Canadian justice,  then what choice are we to be offered? If it is between constant pain and an early death, most of us would prefer the latter. Expert palliative care can mitigate physical suffering in, according to experts, perhaps 95% of all cases. But at present, that level of pain control is unavailable to many Canadians. Without its surety, the choice is limited, if not empty, and justice therefore denied because a real full choices is withheld. Similarly, all agree that end stage home care and hospice care can make the last stage of an illness more than bearable. But many Canadians who would choose this, can not, it is not available. And without its insurance, the choices they are offered to care to the end are limited.”

The most important discussion in hospice palliative care today is: How do we integrate palliative care principles, practices and philosophy of care, from time of diagnosis, for people with any life limiting illness, across all care settings?

With the current needs of the dying, and with the anticipation of the increase in number of death annually, it is imperative that we follow the lead of Palliative Care Australia, and recognize that care of the dying person and the family is everybody’s business! And every nurse, every health care worker, every member of the health care team needs to be able to provide, access or refer individuals to services that will address their needs.

In Canada and in the United States, most dying people do NOT receive the services of a specialty hospice and/or palliative care team. The good news is that most dying people do not require the services of a specialty team. However most people who are dying, and their family, can benefit from the integration of palliative principles in the care provided by their general primary care team.

Most dying people can benefit from the principles, practices and philosophy of hospice and palliative care being integrated in care delivered by their primary care providers.

The primary care team may include the nurse and the health care workers on the medical unit, in the emergency department, working in long term care, working in the community, working in the doctor’s office.

This is education that can and should be integrated in core curriculum for all health care workers and nurses (as well as all members of the health care team)!

Nurses and Health Care Workers (AKA PSWs, NAs, HCAs etc) need to know that caring for the dying is part of their work, and they need to develop the competencies to do so.

We have developed our resources for this purpose. And, last month I delivered a webinar, for nurse educators, looking at how they can “Integrate an Educational Approach in Palliative Care“. If you are looking for ideas or inspiration on educating the health care team, then you might want to check out the recording.

On the other hand, if you are a health care worker and want to explore how you can integrate a palliative approach in the setting where you are working, you might be interested in the text and workbook, podcasts and videos.

Canadian Resources  |  American Resources

And finally, if you are a nurse looking for an easy to read, delicious and digestible palliative care resources – the new text, “Essentials of Hospice and Palliative Care: A Practical Resource for Every Nurse” will be available in July 2016!!

Advance Care Planning Day – Speak Up!

Advance Care Planning Day in Canada, and National Healthcare Decisions Day in the USA, is quickly approaching. On April 16, 2016, it’s time to speak up – and have discussions with friends and family members about your wishes for end-of-life.

 

 

Life and Death Matters created Care Planning Cookies, edible cookies with a message inside, each one intended to stimulate conversations about living well and dying well. One hospital in Ontario is ensuring that each patient receives a cookie on their meal tray, and that family and staff are given cookies with their food and beverages in the cafeteria, leading up to April 16th.

 

Care Planning Cookies - ACP DAY 2016

 

There are many online resources to help you with advance care planning.

Speak Up offers “an interactive workbook to help you complete an advance care plan that outlines your wishes about health care decisions in the event you are unable to do so”, along with printable workbooks and quick guides.

NHDD (National Healthcare Decisions Day organization) offers advance care planning resources, and ways to join the movement.

Five Wishes is used in all 50 states and in countries around the world. Five Wishes can be used in any part of the world as a helpful guide and documentation of your wishes, and is available in 28 languages.

The Conversation Project is dedicated to helping people talk about their wishes for end-of-life care. Watch the co-founder, and Pulitzer Prize Winning Columnist, give an overview on The Conversation Project and why it is so vitally important.

To find out what’s happening in your community, use a Google search for “advance care planning day events 2016 in [city]” and you’ll get a plethora of ACP Day activities that are happening in your area.

Leave a comment and share what you’re doing on April 16th,
and let’s start the conversation.

 

 

iPanel – Conceptual foundations of a palliative approach: a knowledge synthesis

Over the past few years I have cited the iPANEL research (Initiative for a Palliative Approach in Nursing: Evidence and Leadership) as one of the most important research projects in hospice and palliative care today.

Today the iPANEL team announced the publication of their latest article – Conceptual foundations of a palliative approach: a knowledge synthesisThe article can be found here.

Please distribute this article widely! This is an open access journal, so SEND people to the LINK instead of sending the PDF. The number of hits impacts the ranking of the article on the journal’s website!

If you are citing the article, Rick has provided the citation to save you the time and effort of figuring that out!
Sawatzky, R., Porterfield, P., Lee, J., Dixon, D., Lounsbury, K., Pesut, B., Roberts, D., Tayler, C., Voth, J., & Stajduhar, K. (2016). Conceptual foundations of a palliative approach: A knowledge synthesis. BMC Palliative Care, 15(5). doi: 10.1186/s1290401600769. Available: http://www.biomedcentral.com/1472-684X/15/5

Congratulations to the iPANEL team!