Conversations that count - advance care plans

Brian Goodwin loves nothing more than to head out on long cycle rides or walks and describes himself as fit, healthy and active, but in case that changes he made the decision to put an advance care plan in place.

The Ashburton resident, (right) who’s in his late 60s, was prompted to do so when his wife Shirley died.

Brian Goodwin on his bike

“I lost my wife to leukaemia. She’d actually been diagnosed 16 years before and had gone through three lots of chemotherapy.

“It was January two years ago; it was obvious her leukaemia had changed form and it was an aggressive form of lymphoma.

“We knew she only had a very short time to live.

“She made the most of her time… and we did a lot of things but it was very clear she wanted, preferably, to die at home, if that was possible.

He says his wife had her wishes, and actually helped plan her funeral service, arranged the person to do the eulogy, confirmed some hymns, and as a family, they did the rest.

Mr Goodwin then reflected on what he needed to do.

“It was fairly obvious at that point in time, being by myself, that I needed to put something in place so my doctor and other medical people would actually understand what my requirements or requests were.

“My family don’t live in Ashburton and although they’re only a phone call away, they may not be able to be contacted at any particular time.

“[It was also] probably based partly on having seen my wife go through what she did and although she didn’t have an advance care plan herself, she was aware of it and her wishes were made very clear, and all the family were aware of that.”

Different wishes

Unlike his wife Shirley, Brian Goodwin does not want to die at home.

“It‘s one of the interesting factors in this. I have no desire for my family to have to look after me.

“Having said that, I know they will support me and look after me but I don’t expect them to, for me to be reliant upon them to do that.

“If my health state is such that I’m incapable of looking after myself, then I will either happily go into a rest home or hospital, whatever is the appropriate place to go.”

Dr Barry Snow who heads up ACP

The differences in what people want were behind the worldwide movement to create advance care plans, says Auckland neurologist Dr Barry Snow (right).

“Many people when they came to the last days of their life, often received care in a place or in a way that they wouldn’t have if they had had a chance to have a say, or be able to plan for it.

“We realised that if we had [discussions] with people when it’s clear they are dying, but when they’ve still got a chance to put things in place, then they would do things differently.”

Dr Snow is the national clinical lead of Advance Care Planning.

“One of the main preferences is to be at home with the family around but also to have really good care to make sure they’re not a burden to others and are not in pain or distress.

“Most of that can be achieved but it does require advance planning.

“If you want to die at home, quite a few things need to be put in place, such as messages to ambulances and emergency services – ie don’t take me to hospital.”

With medical advances, he believes it makes sense to have a plan for end of life care.

“For 80 per cent of us, you can pretty much predict how we’re going to die because we develop a chronic disease as we get older; kidney failure, heart failure or lung failure, or dementia or some combination of that.”

Options for care

Dr Snow says while the health system is very good at treating acute episodes with intensive care in hospital, based on the cure model of disease, a different approach could be used for the end stages of a chronic disease.

“A person with really bad heart failure often wakes up at night with… chest discomfort and the panicky feeling of not being able to breathe.

“Quite appropriately they’ll call an ambulance which triggers a whole series of events – the ambulance comes, there’s lots of frantic lights, and people shouting and rushing up and down stairs, stretchers, loads the person into the ambulance, encourages them to keep breathing, races to hospital, to the emergency room where people are milling around, taken to a holding bay, put onto a ward, they get treated with diuretics and a little bit of morphine, and then they go home.”

He says there is another option.

“Let me tell you the story a different way – if this person sat with their doctor and the doctor said, ‘Look, you’re probably in the last six months of your life and you’re having some of these events but we can actually teach you how to manage these at home. We can give you a supply of a diuretic and some injections that your family can give you, if they’re comfortable to do this’.

“If you go back to that picture of the ambulance etc, all the person got was an injection of a diuretic.

“For a person who’s having a series of these events as a part of their last six months of life, a visit to hospital can be incredibly stressful and disruptive and horrible for everybody involved.”

There is always the option to call an ambulance.

“The reason why people, in this situation, call the ambulance is because they don’t have a plan in place – their only plan is 111, and it triggers a whole series of other things that could have been done at home if the plan was in place,” says Dr Snow.

Talk to your doctor

An advance care plan is different to an advance directive where you give orders to the doctor, in what is a legal statement.

“An advance care plan is actually more a statement of preferences and general wishes that the doctor takes into account when they’re planning the care,” says Dr Snow.

Brian is active with a plan for changes

Brian Goodwin says he’s made it clear what should happen if he has a debilitating event.

“I don’t want resuscitation, for example, if I have a stroke and I am going to be a vegetable. I see no sense in having resuscitation under those circumstances.

“I’m prepared to accept resuscitation if I’ve got a reasonable chance of surviving with a quality of life, not necessarily the quality of life I had but a quality of life.

“It’s always subjective, I’m aware of that, but I don’t want to be a burden on others.”

To put his plan in place, the keen athlete spoke first to his doctor.

“It’s given me some certainty. I know if something happens to me I’ve got something written down that gives them some guidance on what action they should or should not do.

“It works for me and it will work for my family because they know that I’ve got things in place, that’s the important thing.”