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End-of-life care

To have a “good” death, it pays to discuss what you want before you fall ill – but so many of us are reluctant to do this.

Photo David White

Dr Barry Snow well remembers the day when, as a first-year doctor on a ward round, he and his superiors encountered the wife of a man diagnosed with cancer. She beseeched them not to tell her husband the news. It would be too upsetting, she argued. That wasn’t such a long time ago – the mid-80s – but it’s light years away from the place of the terminally ill patient that medical practice encourages today.

Snow, now a neurologist and head of adult medicine at Auckland Hospital, is one of the leading figures in a new initiative for end-of-life care being introduced at a number of district health boards.

The scheme, called Advance Care Planning, involves patients with a terminal disease being fully apprised of their diagnosis and prognosis at an early stage. After a period of reflection and discussion, and with the support of a healthcare provider, they can set out a written plan for their future care – particularly what they would seek in their final days – while they are still able to articulate their wishes.

In practice it covers every option, says Snow. “At one end, you get patients who say, ‘Yes, I absolutely want to access whatever it takes to keep me alive’, while others say, ‘Four good weeks at home [with minimal intervention] would be better for me than six weeks in hospital.’”

Russell Bradford, 51, who spoke to the Listener in the last two weeks of his life, says his conversation in relation to death was initially an uneasy one. “My plan was to carry on with my life; be normal,” he says. “You never think you’re going to die.”

In 2006, the former navy medic had a kidney removed after it developed a cancerous growth. By the time the Listener spoke him in his bed at North Shore Hospice, the cancer had spread to his bones and Bradford was in the advanced stage of the disease. He says that in 2006 “a guy told me I had five years [to live], so he was pretty much close to it”.

In his room at the hospice, Bradford’s life lies before him in a montage of pictures pinned to a corkboard. Here is the handsome, bearded sailor-groom, the joy-loving motorcyclist. Here are his wife, their children and cats. These are pictures of enthusiasm and hope and adventure: a big life lived large. The man in the bed is not recognisable as the person in the pictures; instead he is a gentle shadow with just a whisper of a voice.

Moving to the hospice was “rather traumatic”, says Bradford. “I was in denial for quite a while. But since I’ve been here, I’ve come to accept it.” Wife Paulette – “my darling” – visits twice a day. She was a navy wren when they met. They have been married 30 years and have two adult children. The week he had his bone cancer diagnosed she was made redundant from her job.

On one of the days the Listener visits, his wife has brought his typewritten diary of the time he spent in Iraq in the mid-90s on a navy posting with the United Nations Special Commission. It is here for more than the memories: the diary will be used to back Paulette’s application for a widow’s pension.

“I’m not scared of dying,” says Bradford. “We’ve now got the funeral sorted out.” Not that he is fussed about what shape that will take. “Without being rude, I’m not going to be here. I want to be cremated and I’m happy to go soon – sooner rather than later – so I’m not a burden.” A few days after this conversation, Bradford died.

To have a good death, says Professor Rod MacLeod, “you have to be able to decide what that might be like for you ahead of time. And given that most people are a bit fearful about death and talking about it, there isn’t a lot of preparation.” Last year, MacLeod – director of palliative care at North Shore Hospital – and his colleagues conducted a survey into public perceptions of death and dying and of hospice and palliative care. The results, submitted to the New Zealand ­Medical Journal for publication, reveal we care more about our nearest and dearest than we do for ourselves when facing issues of mortality.

Seventy per cent of respondents said they get anxious or uncomfortable when they think about someone they care about dying, and half that number said they get anxious or uncomfortable when they think about their own death. What makes people anxious about losing someone is largely to do with fear of loneliness (50%), never being able to communicate with that person again (48%) and growing old alone without that person (40%).

Says MacLeod, “These are important findings, because it gives us a better understanding of what New Zealanders really think. There’s very limited information about this sort of thing from other parts of the world.” Matters of religion and spirituality also play a significant role when we talk about death and dying – something “remarkable” in our secular society, says MacLeod. Thirty-four per cent of respondents considered spirituality to be highly or very highly important in their life; another 20% considered religion to be highly or very highly important. Spirituality can play an important role in preparing someone to cope with death: those who thought spirituality was highly important expressed lower levels of anxiety about death.

“This should encourage us to pay more attention to the spiritual dimension of our life, but also attend to it when sick.”

Judging by the results of the survey, the role that palliative care and hospices play in our lives is significant. Eighty-two per cent believe palliative care is an essential health service, with older people in particular valuing it. They also had the most accurate perceptions about both palliative care and hospices.

MacLeod says part of what hospices do is acknowledge the end point, but they also help people live as best they can before they reach it. He tells one of his favourite stories, which happened while he was at Wellington’s Mary Potter Hospice. “We were looking after a young fisherman who was getting very restless. And the nurses who were looking after him [recognised that] rather than a sedative, he wanted to be outside. “So they took him outside. And it was a rather nice day in Wellington, and he lay down on the grass and stretched out his arms and looked at the sky and died.

“Now for him, that was a good death, because that’s where he wanted to be. When death becomes institutionalised, as it is for a lot of New Zealanders – either in hospital or hospice – the ability to have that flexibility is quite limited.”

On the wall of MacLeod’s office hangs a Callum Arnold oil painting in which a road merges seamlessly into the landscape. The painting caught MacLeod’s eye at an exhibition and he liked the impression it gave of coming through a dark tunnel with a bright light at the end.

“You can see the road is just curving round and you don’t know what’s around the corner. And I thought, wouldn’t it be nice if you were a patient looking at this and thinking, ‘Oh, that’s really bright down there. Something to look forward to.’”
MacLeod says, “Coming to see a doctor who’s concerned with death and dying is fairly daunting.” It’s his business to make mortality less daunting. Especially now, when the ability to diagnose and treat disease is growing out of proportion to our readiness to deal with death.

Professor Rod MacLeod, photo David White

Change is required – both on the part of our doctors and ourselves, MacLeod believes. And in the interests of each of us having the best chance of achieving a good end to our lives, we need to talk about death long before it comes calling.
When MacLeod was chairman of palliative care at the University of Otago School of Medicine, he advocated a change to the curriculums of the Auckland and Dunedin medical schools, so that students would get tuition in the care of the dying in every year of their study, rather than leaving it to chance. “A lot of times, doctors are trained to manage disease – and that’s very important. But not every disease can be conquered … We need to ensure all our new graduates are equipped to care, as well as to cure.”

Currently, medical students have some lectures about the principles of death and dying, plus training in communication skills – but only for a limited time with specialists in palliative care.

MacLeod says students need to be sure they’re confident about dealing with communications – “about breaking bad news” – by developing their listening skills. “Because most often what happens [is] we just listen.”

Even when they have completed their training, doctors’ experience with death may be limited. Other than personal farewells to family and friends, “a lot of doctors see death in tragic circumstances. They see death in the emergency room or they see death after cardiac arrest.

“They don’t see what is more common: gentle, easy dying. And the public perception of death and dying is often what’s on television or in movies. And it’s violent and noisy and messy. A lot of dying is gentle and kind.”

People are likely to spend at least some of their last year of life in hospital, according to findings released in May. A study into healthcare services funded by the Counties Manukau District Health Board found 40% of deaths in the board’s area in 2008 occurred in publicly funded hospitals. Just over 80% of people had at least one inpatient hospital stay – averaging 20.6 days – in their last year of life. A greater percentage received outpatient (84%), pharmaceutical (91%) and laboratory (86%) services in this same period. This is consistent with overseas research.

The report’s authors wrote in the New Zealand Medical Journal: “Decisions about the appropriate use of high-cost health services in people towards the end of life can be extremely challenging. These decisions are resource-allocation decisions as well as clinical decisions and should be based on clinical factors, cost utilities and patient, family and society’s expectations.”

It’s the last one that particularly resonates with Hospice New Zealand. Chief executive officer Mary Schumacher says her organisation has set itself a goal: to kick-start a conversation within the community. She says we are a death-denying society, where youth and beauty are honoured and valued but old age, together with death and dying, is not talked about.

“We’d like to start that public conversation. We are interested in changing the public’s attitude to death and dying and bereavement. We think if people are more open and feel more comfortable, they will be able to be clear about what’s important to them. It will also affect their choice about where they die and how they are cared for.”

Normalising these conversations and empowering people to set out what they want with end-of-life care is not about unrealistic choices, says Schumacher. “It’s about the fundamental right to die in a manner that is dignified and is right for you.” She stresses that these conversations do not encompass euthanasia; only the pursuit of palliative-care options, and within current legal guidelines.

A good death is indeed achievable, says Schumacher. “It is about people dying in a way they would have chosen – and the impact on their families is they realise ‘that is how my loved one would have wanted to die’.” This does not take away the sadness and grief and sense of bereavement. “But having choice about how you are cared for, where you are cared for and who cares for you all contribute [to a good death].”

She offers a personal illustration of how this can work when discussing the death of her mother, Val Schumacher. Val, 88, had congestive heart failure and had developed a number of other complications, says her daughter. After a nasty fall and breaking several bones in her home last December, Val – “a very dignified and quiet woman” – spent a month in hospital. However, some years earlier, she had made her wishes very clear: she did not want any heroic prolonging interventions. Nor did she want to die in a hospital.

In January, Val returned to her Taranaki home. Mary and her siblings made a commitment to support her in this decision, and took turns at being with her. “She wouldn’t have been able to have stayed at home if it wasn’t for the incredibly good care of her GP and district nurses, with backup from the hospice.” Val stayed there until she died in March. “For us as a family, and for her, it was a good death. It was what she wanted. We feel pleased we could support her to die where she wanted to die in a peaceful, dignified manner.”

Had Val wanted inpatient hospice care, that may have been an option. However, even though Hospice New Zealand has centres throughout the country, it still doesn’t reach everywhere – especially rural areas. And that’s where initiatives such as one being run in the Thames-Coromandel region are having some effect.

Te Korowai Hauora o Hauraki – the Cloak of Wellness for Hauraki – is a tribally based Maori healthcare organisation. It’s running a three-year pilot project, funded by the Ministry of Health’s Maori Health Innovation Fund, aimed at providing end-of-life care to Maori in their homes. Chief executive Hugh Kininmonth says the organisation’s aim is to offer a holistic, whanau-centred approach to palliative care and to aim for every patient:

  • to be free of pain and discomfort;

  • to be with family and/or friends (that is, to not die in isolation); and

  • ideally to be at home.

One year into the project, Te Korowai Hauora o Hauraki seems to be achieving its goals. “So far, we have had only one of our 18 people die in hospital,” says Kininmonth. The service team comprises two registered nurses with palliative-care experience, a social worker and a cultural adviser. They are backed up by a team of 130 home-based support workers – each with training in first aid and personal care. They work in concert with GPs, Waikato District Health Board palliative-care teams, occupational therapists and district nurses.

Sometimes it only takes a little to achieve a lot. Kininmonth talks of three generations of one family living in the same rural home with no running water. One of the family members was dying. Rather than admit that person to hospital, as would have been inevitable otherwise, the team arranged for water to be connected to the house. This allowed the family member to die as wished – in comfort at home, surrounded by whanau – and at very low cost, about the same as one night’s hospital stay.

Much of the organisation’s work lies in providing advice and education, which also helps eliminate stress for the patient and family, says Kininmonth. “It not only helps the person and the whanau, it also helps the system, because there’s no point having a person dying in a $700-a-day hospital bed when they don’t want to be there.” Although the pilot is specifically for Maori, there is a lot we can all learn from it, says Kininmonth. “And as a Pakeha, I’d like to die like that.”

Advance care plans

A new organisation is hoping to make end-of-life plans for all New Zealanders.

An advance care plan lists people’s preferences for their end-of-life care. It can cover things as simple as your faith or belief system and who you want contacted in an emergency. Then there are the harder topics: where you would like to be cared for if you are no longer at home, and whether or when you would like medical interventions to keep you alive. And what is an unacceptable quality of life: being permanently unconscious, being permanently confused or being dependent for all daily activities?

To ensure all New Zealanders have access to comprehensive, structured and effective plans, the New Zealand Advance Care Planning Cooperative aims to engage the community in their design and implementation. The long-term goal is to see the scheme applied at GP clinics and hospitals across the country, and regarded as a standardised part of healthcare management.

The move originated after Dr Barry Snow and his peers conducted a quality assessment review among doctors and clinicians last year about problems in the service. From this came a repetitive message: something needs to be done about the way the dying are cared for. Snow, head of adult medicine at Auckland Hospital, says there was a sense that technology was pushing past patients.

“This is all about bringing the patient back to the centre and listening to their voice,” says Snow. “Advance care planning is partly driven by ethical imperatives, but it is equally driven by a sense on the medical side that we’ve got so many treatment possibilities that you can overuse them when the patient is dying.” He likens advance care planning to an insurance scheme: “You are providing for the possibility you might end up in acute medical care – and this is what you want … We tend to use the saying ‘hope for the best, prepare for the worst’.”

Dr Barry Snow, photo Jane Ussher

Information is power, says Snow. “It’s a tremendously powerful thing when you engage thoroughly with a patient and let them participate actively.” Patient treatment preferences for those unable to communicate for themselves can often go unrecognised, says Snow’s colleague Leigh Manson. Writing in the February Nursing Review, she explains there are a number of barriers preventing healthcare providers from having conversations with their patients about death, dying and end-of-life care. “This means that the healthcare system is largely unaware of, and therefore unable to honour, patient treatment preferences when patients are no longer able to communicate for themselves. As a result, the patients’ families may be exposed to the unwanted responsibility of having to choose for the patient.”

In addition, writes Manson, “the patient may be receiving treatment that is not maintaining or enhancing their desired quality of life, including the associated hardship of dying in circumstances they would not have wanted”.

Implementing advance care plans can bring benefits beyond those of meeting a patient’s wishes. A study in the British Medical Journal of plans offered to elderly patients showed their end-of-life care improved when their wishes were determined, documented and respected. And for family members of those patients, post-death emotional trauma was also reduced. The family members made such comments as: “We had a clear plan, so we could just relax and enjoy time with Dad.” Families of patients who did not receive advance care planning also made comments – one said, “Mum didn’t want heroics. She knew she was dying. I was horrified when I heard she got 45 minutes of CPR. She did not want it. All anyone had to do was ask. I feel very hurt, and hurt for Mum and my sister.”

A landmark paper from the New England Journal of Medicine further notes that people with an advance care plan live longer, often need less medication and suffer less depression. Snow stresses that by drawing up an advance care plan, patients are not surrendering power; rather they are recording their wishes. Currently such a plan would most likely be drawn up with the patients’ GP.

As a starting point when drawing up a plan, he recommends www.gowish.org – a website that invites participants to determine and put into order the aspects of their life that matter to them and how they want to be treated when they are dying. Topics include whether matters of spirituality should be taken into account, whether a person wants funeral arrangements to be made and what role family and friends should have. The key to the programme is getting conversations going between the family, patient and doctor.

Already there’s a well-defined core of groups, locally and internationally, working on advance care plans, says Snow. Eventually, he would like to see practitioners – ideally people with nursing backgrounds – trained in the preparation of advance care plans, with those plans put on the to-do list along with the drawing up of a will. With the nationalising of standards, patients’ plans would be recorded on their health files and their advance care plan flagged regardless of what medical service they received, irrespective of the location.

The time to talk is now, says Snow, who notes that more than 85% of people die after a chronic illness, not a sudden event, and that up to half of us are not in a position to make our own decisions when we are near death. “When you go and see your GP, you get a choice. But when you’re dying, there’s not so much.”