Palliative care in Newfoundland headed in right direction, says director

The Newfoundland and Labrador Medical Association saysthe provincial government should use its fiscal crisis to design a leaner and stronger public health system includingimproved palliative care for an ageing population.

It's not giving up to embrace palliative care, it's accepting the inevitable.- Dr. Susan MacDonald

Dr. SusanMacDonald, medical director of palliative care at Eastern Health, said a lot has been done to improveservices and more is needed,but we're heading in the right direction.

"I would say we are about 50 per cent where we need to be," saidMacDonald.

"If we could design the perfect system I would be strongly advocating for education for family physicians ... and the second thing would be the community health nurses, making sure those individuals have the same opportunity for education."

Different approach

In 2009, a report slammed the palliative care system that was in place, calling it completely inadequate.

• Thousands in N.L. 'suffer hideously,' palliative care report finds

It found that few of the people who die in Newfoundland and Labrador have access to appropriate palliative care, and spend their final days in needless anguish.

MacDonald said considerable progress has been made at Eastern Health since then.

A series of steps have already been taken to reorganize and rethink how palliative care is provided and it hasbecome more of an essential component of community health.

"Palliative care is very much a philosophy, it's not just a place where you go for the end, a bed for example in a hospital or in a palliative care unit, it's very much a philosophy of how people are cared for," MacDonaldsaid in an interview.

The whole idea of palliative care has become a two way discussion, and MacDonald said, everyone should have a plan.

Palliative care is very much a philosophy, it's not just a place where you go for the end.- Dr. SusanMacDonald

A focus has been put on havinga "good conversation"and directing the care to "what the patient and the family think the care should be" because no two patients are alike.

"As a clinician ... our job is to really sit down and to get know that patient as well as we possibly can because you can get on the treadmill of "I have this condition and the usual thing we provide is this", but that's not necessarily the right thing for everybody," said MacDonald.

"Think to yourself ... about your own advanced care health plan, what's important to you and if you couldn't speak for yourself, do the people who would speak for you be able to tell the healthcare providers exactly what you want?"

Building blocks

Palliative care has to start from the ground up saidMacDonald, withfamily physicians and communityhealthnurses being provided the proper education, and have the confidence to deal with different situations.

She said family physiciansneed to feel comfortable havinga conversation with their patients, that can be quite uncomfortable for both the physician and the patient.

They also need "symptom management" skills,to use medications appropriately, added MacDonald.

This can helpease the burden ofa terminal illness for the patient, which wouldallow them tobe independent for a longer period of time and, in turn, caring for patientat home may be possible.

She said many community health nurses in the eastern region of the province have already completed the L.E.A.P.(Learning Essential Approaches to Palliative and End of Life Care) program.

This enables the nurses to identify symptoms and medications as well as"start the ball rolling"managing the patients condition while working with the family doctor.

Big picture

MacDonald, whois also president of the CanadianSociety ofPalliative Care Physicians,has been vocal about moving things forward, but shefeels there are still pieces missing from the puzzle.

She saidifmore change happened perhaps on a national level, it would be easier to move things along provincially.

"When you have a national strategy, it really does say to the population and to those who hand out the money and make the rules, that this is really important," she said.

"If you couldn't get your dialysis,therewould be an outcry, but the fact that in many places there's no palliative care or very limited access to palliative care services, itdoesn't seem to bother people in the same way ... andof course what happens nationally filters down on a provincial level and then onto a local level."

Changing society'sview ofdeath is difficult, said MacDonald, but making people realize that it's a part of life is half the battle.

"Every single one of us is going to die and unless you're hit by a bus or have something dramatic happen, you're going to be chronically ill for a while and you're going to require some palliative care in some form or another."

"It's not giving up to embrace palliative care, it's accepting the inevitable and it's accepting the good stuff that is still left to happen which is good symptom management and quality of life,that'snot giving up in any way."