Quality of Death is Part of the Circle of Life

Pete Fisher
5 years ago
• Categories: Local

From left, NHH retiring board chair Elizabeth Selby, Community Care Northumberland executive director Trish Baird, Community Care Northumberland regional hospice program co-ordinator Cheryl McFarlane and Northumberland Hills Hospital service lead for palliative care and pain management Dr. Francesco Mule are seen following a keynote address on the continuum of palliative and end-of-life care at this week’s NHH annual general meeting.

By Cecilia Nasmith/Today’s Northumberland
We all care about our quality of life but, for hospice workers, this is tied in with one’s quality of death.

There comes an age where the end of life is closer than the beginning. As Northumberland Hills Hospital president and chief executive officer Linda Davis said this week at the hospital’s annual general meeting, so many local residents are aware of (and concerned with) our collective aging.

As of 2016, fully 25% of Northumberland County’s population was aged 65 or over, compared to the Ontario figure of 16%. It is estimated that the county’s population aged 65 and up should rise to 34% by 2036.

Davis noted that this demographic comes with multiple health requirements, including the topic of the keynote address – the continuum of palliative and end-of-life care.

Community Care Northumberland executive director Trish Baird said there is a long grass-roots history of local volunteers supporting people who are dying. Community Care has been involved in volunteer visiting since 2010, Baird said, and this group of volunteers has grown into a multi-disciplinary community-outreach team offering both clinical and non-clinical services, following the continuum of palliative care from the time of diagnosis to death – and even following up with grief support afterwards.

Northumberland Hills Hospital service lead for palliative care and pain management Dr. Francesco Mule gave a doctor’s perspective on the issue.

“Once a diagnosis is made, that person’s world, as everyone here can acknowledge, is shocked. Our job as clinicians and hospice-care providers is to prepare that person for two things – a plan to address and treat suffering and a plan to address and acknowledge crisis,” Dr. Mule said.

“Traditionally, people have referred to palliative care as the last step – there’s nothing we can do – you’re terminal. Our job is to essentially change this mindset.

“Palliative care takes that individual, sets aside that diagnosis and addresses identity and dignity. Not only am I treating the symptoms – pain, nausea, shortness of breath – but I am helping this individual manage life.”

Dr. Mule prefers the concept of a life-threatening diagnosis that may end a life over the concept of “incurable.” This makes the patient a survivor – and when available methods of treatment do not work, the clinician works toward containing the symptoms and helping the patient prepare for death.

Some doctors still resist introducing the concept of palliative care, feeling that it removes all hope. His own preference is introducing the concept as soon as possible with the goal of optimizing one’s quality of death.

This is where hospice care comes in, Community Northumberland regional hospice program co-ordinator Cheryl McFarlane said.

McFarlane cited a figure she recently heard from Hospice Palliative Care Ontario that only 3% of Canadians die suddenly. The remaining 97% will need help to live until the end of life with as much comfort and support as possible.

“We constantly have our ear to the ground and are constantly talking to partners and collaborators,” she said.

“We want to know about gaps, we want to know about trends, we want to know about the struggles and what we can do to have these things removed.”

She referred to a hospice-hub concept, like the centre of a flower, with petals making a beautiful whole. Among the petals:
Hospice volunteer visiting has been in Northumberland for some time with specially trained volunteers in the home offering compassionate non-judgmental companionship and support for everyone in the family.

Grief support and bereavement care includes anticipatory grief, and is addressed in volunteers as well as clients and their families.

Psychosocial counselling and spiritual care for people in their homes address family dynamics and more complicated situations that go beyond the role of a volunteer.

Ed’s House will offer a residential hospice by this time next year – offering services to non-residential clients as well, such as caregiver relief and wellness programming.

Caregiver support is offered as needed by the caregivers – whatever the requirements, McFarlane said, they will get creative and make it happen.

Training and education is offered not only to volunteers but to care providers, clients and even members of the community.

The palliative-care community team is an interdisciplinary team complete with nurse navigator to keep things co-ordinated, from early engagement to pain-and-symptom management. It’s a successful approach, thanks to collaborative community partnerships.

“Ninety-four per cent of our clients and families say the most important thing is that all the community partners know each other and are working together for them,” McFarlane noted.

“What is important is to actually recognize what the journey is,” Dr. Mule stated.

“A life-threatening diagnosis is made, and what we want to emphasize is early information, early acceptance and the team being part of the decision-making process at the beginning.

“What I want people to take home is that it’s never too early. Early engagement has value. Everyone in this room will one day die, so why not acknowledge this and work toward quality of dying as part of the circle of life. There has to be some investment in that, and I think we can make a difference.”

“The earlier, the better,” McFarlane agreed.

“That way, we can help you plan and strategize and come up with options so you can go on and live the best you can with people you want to be with.

“We will help you, no matter what your wants and needs and desires are.”