Conversation that Count – Inaugural Awareness Day 16 April

Where one chooses to live out their remaining days is one of the most important decisions to make when it comes to advanced care planning, says tlc4u2’s Jackie McCullough.

Recently it was Conversations That Count Day – a national initiative promoting Advanced Care Planning - aimed at breaking the ice and getting the ball rolling when it comes to thinking, talking and planning one’s future and end of life care.

tlc4u2 is a Whangarei-based home care provider, offering both live-in and live-out caregivers.

While many opt for the security of aged residential care facilities, in Jackie’s experience, as both a registered nurse and in her current role as clinical assessor, the majority of people prefer to pass away at home surrounded by family and personal treasures that are reminders of important places, times and people.

“Clinical settings tend to be small and full of distractions, in addition to the noise of other people going about their business. With support services, such as Hospice, general practitioners, district nursing and support workers, remaining in their own home is a viable choice for many people.”

This is backed by statistics from North Haven Hospice showing that 42.6 per cent of Northland hospice patients die in their own homes, 18.2 per cent in aged residential care facilities and 40 per cent in private hospitals.

Palliative medicine specialist and medical director of North Haven Hospice Dr Warrick Jones says that in Northland last year 89.5 per cent of patients who received specialist palliative care services via the community hospices died in their place of first choice (53 out of 507 did not). 

“I think that having a 90 per cent success rate in meeting patient preference was a very good achievement. To facilitate the care of someone who is dying at home requires a great deal of teamwork and co-operation between the family who will be required to do some things that they have not done before, the primary care services to review and oversee medication, the hospitals to enable timely discharges and the community hospice services who give 24hr 7 day a week support. 

“Of the 53 patients who didn’t, 66 per cent (35) died in the acute hospitals and 19 per cent (10) at North Haven Hospice. Sometimes events overtake that patient’s preference that results in an unscheduled presentation to ED and the admission to either hospital or transfer to the Hospice inpatient unit.

From what we know the vast majority of this group wished to have died at home, with two per cent preferring the Hospice and two per cent preferring a private hospital.”

But a big reason that wishes are not carried out is because the person involved does not make them clear, says Northland DHB physician/cardiologist Stephen Jennison.

“(The worst-case scenario) for me as a health care provider is when a patient, with or without their partner, has gone through the ACP guide and formulated a plan but not shared it with whanau. 

“Sometimes people hide their illness from the family because they don’t want to be burdens. The kids might go off overseas and all of a sudden one of the parents gets sick. The kids feel guilty, conflict can start and there can be a divide between the family.”

Dr Jennison says there is never a right or wrong time to have the conversation and part of his job is to steer people towards the website or pamphlet.

“The conversation is for family and whanau, even if they are in good health and I’d like to separate Advanced Care Planning from End of Life directives, they are distinctly different. 

“Advanced Care Planning is an approach respecting a patient’s wishes about what they do and do not want done: to try and bring forth decisions about a patient’s medical journey and ACP is hoping to empower patients to feel comfortable about being able to participate and navigate their own medical journeys. 

“It is really about respecting the patient’s journey.” 

Since its introduction to Northland two years ago, the response to ACP has been positive, says Dr Jennison. However: “One of the challenges is to get the involved people around the table: the partners, children and whanau.”

Start the Conversation postcards have been distributed throughout the healthcare sector encouraging people to “Start a Conversation” and get the ball rolling.

Ms McCullough says that many people are diagnosed with a life-limiting disease while still capable of making decisions for themselves.

“One of the most important questions that requires discussion and advanced care planning is the setting for which the individual wishes to live out the remaining days of their life.

“One of our most memorable cases involved a gentleman who was living in Auckland but had bought land near Pataua South 12 years ago that had a converted cowshed as a dwelling. His wish was to pass away on this land in his cowshed with the sound of the waves in his ears. 

“Luckily it was summer so the outside toilet and shower were not a problem. He spent his final days on a lounger bed put together by his daughter and grandson. We never got a chance to put in someone to take over from his family because when I visited, it was evident that he had no more than a few days left. He died as he had lived - in control of his destiny.”

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