How to plan for a good death
Bill Taylor knows exactly what he wants when he dies, and he’s spelled it out in a plan. More of us should be doing the same, writes Shabnam Dastgheib.
Bill Taylor has inoperable lung cancer and less than a year to live.
The 77-year-old Waiheke man lives in a small cabin overlooking the ocean and, despite a raft of other health issues, describes the current quality of his life as brilliant.
In the time he has left, he plans to work part-time, enjoy his family and friends, and eat his way around the best restaurants on Waiheke – a type of foodie bucket list.
When the time comes for the hard medical choices, he has asked not to be resuscitated, and he wants his body donated to science, if it is needed.
Failing that, he has requested a flatpack coffin as a cost-effective alternative, and says it is a funny thought to imagine his family trying to put a coffin together.
Taylor’s end-of-life plan is centred around keeping funeral costs as low as possible, and making sure his friends and family are comfortable with his choices.
‘‘I’m not going to leave them anything, so I don’t want to leave them with the bill,’’ he says.
Planning for the future
Advance Care Planning (ACP) is the process of planning for future healthcare and end-of-life care and identifying what is important.
The concept of writing an official end-of-life plan has been gaining momentum over recent years as New Zealanders become more comfortable with the taboo subject.
The plan can include guidance to medical and hospice staff, as well as funeral and burial choices.
ACP project director Leigh Manson says if no planning is done for end of life, people can find themselves in crisis without being sure what is important.
‘‘This can lead to the healthcare system doing everything, including providing unwanted and unwarranted treatments.’’
Manson says it is best to think about what really matters at a time when there isn’t a health crisis.
‘‘People generally prioritise spending time with wha¯ nau, quality of life over quantity, staying at home as long as possible, avoiding being a burden, being in familiar surroundings, symptom control and attendance to personal comfort.’’
Taylor says that knowing his time is limited is a blessing, as it means he is able to do some hard planning.
‘‘I think we should be much more open about death . . . I do think we try to sugar coat it. We are all going to die.
‘‘The stiff upper lip English way is unfortunately the main culture here . . . but I think in New Zealand we are a little lucky because of the Ma¯ ori attitude to death. They let it all out and I love that, and I think that’s coming a little more into New Zealand’s dealings with death.’’
Being able to speak about his last wishes and what he wants for his funeral means he can make sure he does not leave his family with too much to worry about at the end of his life.
A confronting thought
The thought that one day we will all die can be morbid and confronting, whether death is imminent or decades away.
Making a plan for how that death is handled, and for what happens to your body, your finances, your legacy and the people you leave behind, seems a daunting task, but experts say it is one best dealt with as soon as possible.
With a clearly written plan, family and loved ones will ideally be left calmly executing your wishes. Without a plan, they could be scrambling to figure out what is best and what you might have wanted.
Advance Care Planning clinical lead Chris Kalderimis says he understands that planning for death is challenging and confronting, but it is necessary.
He advises people to speak to a professional who knows them well, such as a family doctor, to put together a plan.
‘‘A lot of times we don’t know what a patient’s wishes are, and those can materially affect what happens. It can be very empowering for the patient to have their voice heard at that time,’’ he said.
Kalderimis – a GP in Wellington for more than 40 years – says that, if it comes down to it, many people would not want to prolong their time if there is no quality of life.
‘‘If you have a major heart attack, a stroke, if you’re involved in a major car accident . . . if you haven’t made a plan beforehand, the quality of your life is not an issue, so everyone will do what they can to prolong your life.
‘‘I think a lot of people have expressed their point of view to their family, but it’s so much more powerful if you write it down.
Kalderimis has noticed the growing popularity for putting a plan together in the past two or three years, even among cultures that might traditionally have shied away from speaking about death.
Honest conversations
That has been the case for 79-year-old Ros Capper and her family.
Her husband, Mike, was suddenly diagnosed with prostate cancer
‘‘I think it takes quite a bit of time to think about yourself, but it helps you deal with reality. I don’t honestly think we truly believe deep down that we will die.’’
seven years ago, and it came as a huge shock to a family who had never discussed death in any form.
The Auckland woman says her husband’s diagnosis prompted some honest conversations between them and their children but, because he had no plan for his death, things were not handled as well as they should have been.
‘‘It wasn’t good, but it was the best we could do.’’
Capper cared for her husband for about three years before he died, and she has since written a book on the subject. She now also sits on the government steering group on ACP.
She says her husband’s death prompted her to get her own plan in order, and she now advocates for everyone to have a plan written up as soon as possible.
It is important to create a new tradition around death, to communicate with family and to know what to watch out for, what is available and the costs, she believes.
‘‘I think it takes quite a bit of time to think about yourself, but it helps you deal with reality. I don’t honestly think we truly believe deep down that we will die.’’
It isn’t uncommon to put things off until it is too late, which often means leaving someone else to deal with it. But that isn’t fair, she says.
Living document
ACP facilitator for the NelsonTasman district Carla Arkless says death is a difficult thing for people to think about. ‘‘It can trigger emotions, fears and grief that we would rather not experience.
‘‘It is common for people to think that there is plenty of time to plan for the end of our life. It is also common for healthcare teams to wait for the patient to bring up such discussions, and for patients to be waiting for the healthcare team to bring it up.’’
Older people don’t always realise they have choices about care and treatment, and so do not see a real need to have the conversation.
Arkless advises making a plan as early in life as possible and treating it as a living document, to be changed when required.
‘‘ACP conversations should, ideally, start with wha¯ nau and those close to us, and involve the healthcare team in the medical side of things.’’
Taonga for those left behind
The New Zealand Seniors Cost of Death Report published recently found almost nine in 10 seniors thought there was a need to talk more about death and dying in New Zealand.
It also found that fewer than one in three people had made or were likely to make their own funeral arrangements, but also that more than two-thirds believed they should be doing more to prepare. This included letting family and friends know their final wishes.
Advance Care Planning promotions coordinator Clare O’Leary says an end-of-life plan can be a taonga for the family left behind.
‘‘People avoid doing difficult things. It can be a confronting conversation and, in our society, we still have a taboo about death and dying. However, there is a strong international movement to work against that.’’
Many communities avoid talking about death because there may be a sense that you might bring it closer, she says.
‘‘But once you get over that initial fear, you find many people are fascinated by it, and have many stories to discuss.’’