Decisions are made each day about how we live and die. Many physicians encourage people to spell out end-of-life wishes while still healthy. If you were in late-stage dementia, would you want a feeding tube or other interventions? Would you want CPR if cancer was likely to kill you within weeks or months? Clinicians say a number of templates and even a simple question can help anyone start to outline priorities. But many families delay taking action until it's too late. As MPs debate the End of Life Choice Bill, Dawn Picken explores tough conversations and your options.
The long goodbye
David Forlong says his mum, Margaret Lincoln, suffered dementia during the final decade of her life.
A stroke about five years into her illness rapidly sped the pace of memory loss and functional decline.
"She came away a different lady."
Forlong says the same woman who used to enjoy letter writing and reading the Bible couldn't even put pen to paper.
"She said, 'What's happening to me, David?' It was a really horrible phase of her realising something wasn't right."
The Bethlehem resident says his mum became child-like. She couldn't use the toilet or eat by herself.
"I'd pick up her fork and help her eat. We were quite lucky in that she always remembered me."
There were many hospital stints during that time, and Forlong and his sister served as enduring power of attorney (EPOA) for their mum.
The legal document allows a patient to identify one or more people who'll act on their behalf if they're deemed mentally incapable of making health care decisions.
Forlong says doctors several times offered the option of either making his mum comfortable or going a bit further with medical interventions.
Earlier in her illness, he says she recovered enough to return to her care facility, or even home for Christmas.
That time, it seemed she had recovered part of herself.
"Her mind was really sharp, it was like our mum's back, we got little pockets of it. It's a horrible disease but there's still some good bits that came of it, as well."
Forlong says his mum never spelt out what kind of care she wanted for the end of her life,
"It happened so quickly and before we knew it she was at the stage where we couldn't talk with her."
He and his sister used their best judgement. During her final hospitalisations, he says doctors told the family it was time to consider comfort care rather than more aggressive treatments.
"Each time they'd say, 'I think you're best to just let her go next time'."
Towards the end, when his mum became unwell, the family had already decided comfort took priority over extending life at all costs.
"She wasn't eating or drinking. That's what took her in the end. Previously we would say get a drip in her and get fluid into her that way."
It was really hard. My sister and I said, 'Did we really say that?' But it couldn't have gone through for another year. She just kept getting worse and worse. It was the right thing to do."
Forlong's mum died in January, 2017 at the age of 79.
Options and obstacles
An advance directive can be used on its own or in connection with an enduring power of attorney. It's defined in the Code of Health and Disability Services Consumers' Rights as "a written or oral directive - a) By which a consumer makes a choice about a possible future health care procedure; and b) That is intended to be effective only when he or she is not competent".
New Zealand Medical Association chair Dr Kate Baddock says advance directives are popular, but only for a certain demographic.
"You don't see 30-year-olds writing advance directives, but you do see a lot of people doing it where they know they have an illness which is likely to be the cause of their death."
Dr Baddock cites severe heart failure, severe respiratory disease and cancer as conditions that spur people to write advance directives.
In addition, she says people who've had a car accident, heart attack or other brush with death are sometimes motivated to put end-of-life wishes in writing.
Unlike an enduring power of attorney, an advance directive is not legally binding, according to the Medical Association website. And patients cannot demand or refuse anything in advance they cannot demand or refuse when conscious and competent.
"Therefore, patients cannot refuse in advance compulsory treatment provided under the mental health legislation or demand euthanasia or assisted dying. Also although advance requests or authorisation of specific treatment can be helpful, they lack legal weight if clinicians assess that treatment to be inappropriate."
Dr Baddock says health care providers respect wishes laid out in writing, and patients have broad discretion about what happens to them.
"They can choose whether to have treatment; they can choose if they don't have treatment; they can choose to withdraw treatment; they can choose not to start treatment and they can choose not to be fed or to be given fluids."
She says most common advance directive findings are people choose not to have procedures that will prolong their lives or have heroic measures such as CPR meant to save them if they were to have a heart attack or stroke. Dr Baddock says DNR ("do not resuscitate") statements are routine. "It would be a very rare situation where you have an AD or POA that says I want to be resuscitated in all these circumstances. I've not seen one."
Dr Baddock says it becomes obvious when a discussion needs to happen between a doctor and someone with a serious illness about last wishes.
"It can be difficult if it's initiated too early. Generally speaking, if you do that, the patient shuts you down pretty quickly: 'I'm not ready to have that discussion.' I'm not in that stage of life...in which case you don't have it, because to force a discussion like that is just really bad for the doctor-patient relationship and doesn't do anything good for the patients at all."
My best day
Dr Andrew Corin greets me from his office at The Doctors Tauranga. All ages appear catered for: A Winnie the Pooh kite hangs from the ceiling above an exam table, and copies of This Old Stick, Dr Corin's fictional book about older patients, sit on his desk.
A practising GP since 1997, Dr Corin since the end of 2017 has gathered information from a broad spectrum of patients for a project he calls, "My Best Day." He asks each patient what a good day looks like and reasons they're alive. He enters answers in their records.
He says he's gathered information from at least 300 patients so far.
"I think it's actually quite a life-giving conversation to have in the context of an ongoing relationship with patients in primary care. We've cared for them through trauma and vulnerability and there's a layer of trust. So these conversations can then enhance not only the quality of the health care journey but the quality of life for people."
He cites a former patient he calls Claude. His wife had died, and he developed oesophageal cancer. It was inoperable, but Dr Corin says oncologists suggested chemotherapy. "...and all of his friends said you must have chemotherapy so you can complete your bucket list- and he said to me, 'Andrew, I don't know what a bucket list is. I don't know what to do about the chemo thing".
So Dr Corin asked Claude to think back to what he'd described as his best day, which involved drinking coffee and having a yarn with mates.
"And I said to him that's what's important to you. The reality with chemotherapy is it's gonna be very intense, make you feel nauseated, quite achy, you probably won't want to leave your caravan." Dr Corin told Claude he might get a few extra months of life with treatment but miss out on best days. Claude decided to forego chemo.
"He left the room very empowered to make that decision..he was still able to have cups of coffee and died three months later. He said to me at the end of his life, 'I don't regret that decision. I've enjoyed these last few months'."
My Best Day is reviewed each year with patients, something Dr Corin advises for people who've written plans such as advance directives.
"Patients' wishes change, and what often happens is the closer they get to death, the more they want to hold onto life. So it's one thing to make an advance care directive when you are well and death is a long way away, but as death gets closer the quality of relationships, particularly family relationships and finding meaning in life becomes really important."
Dr Corin says conventionally-trained doctors are implicitly taught death equals failure and survival should be sought at all costs.
"And that's wrong. Death is very much a part of living. It's part of the cycle and learning how to support and care for our patients in our life journey which includes death is very important rather than fighting against the inevitable."
Team effort
[Dr Prue McCallum, palliative care specialist, Bay of Plenty District Health Board]
Staff at the Bay of Plenty District Health Board take part in the national Advance Care Planning (ACP) programme. Like an advance directive, it's a process where a person can state their preferences for future healthcare, and it's not legally binding.
Bay of Plenty District Health Board medical director Dr Hugh Lees says he encourages people of all ages to consider a health care planning document.
"It's better to think about it ahead of time when you're really well and can talk about it with family and start to write it down, maybe with the help of your General Practitioner ...having said that, I haven't completed mine yet, but I've tried to start it a few times."
DHB palliative care specialist Dr Prue McCallum says people who repeatedly come to hospital or outpatient clinic with the same symptoms may also be encouraged to think about an advance care plan.
"The advance care plan is the patient's voice."
She says making end-of-life treatment decisions is a team effort.
"It's not actually up to the family as next-of-kin to make decisions. With the health, safety and disability documents, it's clinicians who act in the patients' best interests, and they take information from advance care planning, from family, from whānau, from other people to make that decision...people in the community incorrectly think that it defaults to next of kin, which is not actually correct."
Dr Lees says he doesn't think intervention - doing everything medically possible for a terminal patient - is the default for care providers.
"In a younger person or a child, you'd be much for likely to try harder for longer as opposed to an elderly person, but it's individualised because we all age at different rates and your actual age doesn't reflect your physiological age. It's always done in collaboration with the patient and if the patient is not able to speak for themselves, in collaboration with the family to try and understand what the person would've wanted."
Tough calls
Jill asked we not use her real name, because her family is still in the throes of her father's dementia. The Bay of Plenty resident says her dad now lives in a care facility. The latest health crisis happened when he developed an infection.
It was proposed he be moved to hospital - ''which would have been too cruel for Dad."
She says her father is non-verbal and not very mobile.
"So we had to do battle to keep him in the rest home where he is comfortable and content. Happily, his doctor of many years understood and she dropped her practice and came straight away, and gave him antibiotics to treat him in the rest home."
Jill says though her mother is her dad's enduring power of attorney, the family always consults his siblings and their spouses about his care.
"...we haven't refused treatment, just moving him to hospital. If he had cancer, I suspect our family would not advocate for surgery or chemo for him. It would be too confusing and too cruel." She says the family has also decided against certain dental treatment.
"But not because he doesn't deserve treatment. Because we feel the trauma would be too much for Dad. We do it because we want the best quality of life for Dad, not because we want him to die."
Reimagining dementia care
The author of a new book called Dementia Reimagined says family members and people with dementia need to be better about educating themselves. US bioethicist and psychiatrist Dr Tia Powell told interviewer Terry Gross on podcast Fresh Air, "It's a fatal illness. It comes to an end. And dealing with that straight up makes it more likely that you have a comfortable end." Dr Powell's grandmother and mother were diagnosed with dementia.
"I think for a lot of people, we go to great effort to provide them with miserable deaths. And I don't think it's the best use of our technology. And I'm not even talking about the money part of this, although it's very expensive to provide those miserable deaths. I'm just talking about getting people what they want."
Dr Powell says patients in the final phase of dementia cannot get up out of bed by himself or herself, may not be able to swallow or speak, is incontinent and probably doesn't recognise the people they love.
"For me and for a lot of people, the important thing then is to say keep me comfortable. We can't fix dementia." People in early stages of dementia, says Powell, can make an advance directive asking for comfort care.
"It's not no care...It is very aggressively do everything you can to make sure that my end is comfortable." It might mean foregoing interventions such as hospital transfers, feeding tubes and CPR.
One reason Dr Powell says dementia patients receive interventions is because they make life easier for staff at care facilities.
"We have gathered really incontrovertible evidence that a feeding tube in end-stage dementia certainly does not increase your quality of life, but it actually doesn't even increase the duration of your life. So I think the GI doctors who put in feeding tubes in and the nursing homes that prefer them, frankly, because it takes fewer staff time to hang the nutrition from the feeding tube, you know. They're not really actually looking at this in terms, I think, of what's best for the patient."
The Alzheimer's NZ website states, "There's no evidence to show artificial hydration (additional fluids) or nutrition prolongs a person with dementia's life, makes them comfortable nor leads to a more peaceful death."
Dr Corin agrees Western medicine likely intervenes too regularly with people at the end of life, but cautions against singling out dementia patients for less treatment.
"I think we need to be very careful that we don't diminish the quality or value of somebody's life just because they have dementia. Equally, it's important to encourage people to be thinking about levels of interventions they want as their health declines. But treating dementia differently from other progressive and dysfunctional conditions is inappropriate."
David Forlong, whose mum died with dementia, says her illness made him consider what he would want for his own end-of-life care.
"It's quality of life, really. I just think how hard would it be to be treated like a baby again. I had my mum and I was changing her nappies like I would a child and I would hate for my children to have to do that for me. I don't think I'd want to be hooked up to machines that's keeping me alive. I think if I become unwell like Mother, I'm happy to pass that way, absolutely. No interventions, just get comfortable."
Advance Care Planning:
https://www.hqsc.govt.nz/our-programmes/advance-care-planning/publications-and-resources/publication/3212
Advance Directive:
NZMA - Information and Sample Forms:
https://www.nzma.org.nz/__data/assets/pdf_file/0018/77040/Advance-Directive_sample-forms.pdf
Enduring Power of Attorney:
Ministry of Social Development - Information and Sample Forms:
http://superseniors.msd.govt.nz/finance-planning/enduring-power-of-attorney/index.html
Dementia Reimagined:
https://www.npr.org/2019/05/21/725366912/dementia-reimagined-asks-can-there-be-happiness-for-those-with-memory-loss
[sidebar/fact box #1]
Choosing wisely - changing the culture of care
Choosing Wisely is a global initiative that has been implemented in countries including New Zealand, USA, Canada, the UK, Australia and some of Europe. The campaign aims to help health professionals and patients engage in conversations about unnecessary tests and treatments and make smart and effective choices to ensure high quality care. The website outlines best practices for treating minor ailments like ear infections, to life-threatening illnesses such as cancer.
Choosing Wisely encourages patients to asks if a treatment or procedure is really necessary, and provides disease-specific advice, such as when to stop cancer treatment. The site says cancer responds best to treatment the first time.
"If you have had three different treatments and your cancer has grown or spread, more treatment usually will not help you feel better or increase your chance of living longer. Instead, more treatment could cause serious side effects that shorten your life and reduce the quality of the time you have left."
Choosingwisely.org.nz
Dementia a Growing Concern
Almost 70,000 Kiwis are living with dementia today.
More than 170,000 Kiwis will be living with dementia by 2050
Dementia impacts more women than men - around 30 per cent higher
The total cost of dementia to NZ is now around $1.7b and will reach around $5b by 2050
New models of care that keep people healthier at home for longer could achieve cost benefit ratios of 6.6 times the value of investment.
source: Alzheimers.org.nz