It’s the moment that will come to all of us, but our society generally avoids thinking about death. Those who spend their careers with the dying say that a little preparation is all that’s needed for a good end of life.
Nikki Johnston, palliative care nurse practitioner
People die as they live – some are angry, others are spiritual. Whoever you are, you don’t change when you are dying.
Palliative care is not just about dying – it’s also about living. It’s about making the last days and weeks as good as possible. Death is something we just don’t talk about in our society – it’s hidden so people have a very individual response.
Sometimes death is very sudden. But the majority of times, people are elderly or have a disease and so become tired and sleep a lot. They start sleeping more than they are awake. Next the eating goes and generally their thirst disappears, too. They become inactive, in bed, not walking or moving.
Once they become unconscious, their breathing patterns change – it’s called “Cheyne-Stokes breathing”. There are gaps in breathing and then they take big breaths to catch up. It can be quite scary to watch if there is a big gap. You think they have died, and then they take a big gasp, but it’s a natural process. Unconscious Cheyne-Stokes breathing can last a few hours or last anywhere up to two weeks.
Sometimes people wake up for a short time just prior to death. I see lovely things happen during that brief window; they will say “I love you, it’s OK that I’m going”. I have also seen many people have visions of people come to collect them. I believe they’re communicating with something beyond what we can understand.
Sometimes families are by the bedside for many hours and leave to have a drink and their relative dies. Other times people seem to wait until someone arrives. I wonder if there is some control over this? It happens when it happens and that’s OK.
There is a sense of knowing when a spirit leaves the person. There is life and breathing and then they stop breathing and the person is gone. All that is left is the body. Often they look so calm. If someone has been really sick and struggling, once they die they look younger and they look peaceful.
Relief from pain and suffering is definitely important, and so is emotional support. I have seen people die who didn’t have relief and it’s not nice. When someone who is dying has relief from their suffering, sometimes their past will come up – did they get it right, have they got regrets, are there people they would like to say sorry to or reconnect with? These are really important to feeling they are ready to die.
Some people want death to come and it doesn’t come fast enough. Waiting to die can be one of the most difficult things for the person and their loved ones. As a health professional, continuing to turn up and supporting everyone involved shouldn’t be underestimated. Letting them know that there are options is important, too, like not taking antibiotics for pneumonia.
There is a lot of money poured into keeping people alive, but at the end of life we are trying to treat death as a normal process and quality of life must come into it. I don’t think it’s necessarily understood well. There is not just one way of doing it.
Some people get a lot of strength from knowing what’s going to happen after they die. If they believe they will go to heaven or a higher place, they get comfort from that. Religion or spiritual beliefs can definitely give them strength and reduce fear. But that’s not true for everyone – sometimes people draw on other strengths.
Death is a leveller, it will happen to every one of us. It’s such a privilege to do this work. It’s so honest.
Dr Bill Silvester, ICU specialist
Dying is not a medical failure, it’s part of living. Sometimes my patients aren’t ever going to recover and the medical procedures we do to them probably aren’t the sort of things they would have wanted. But they were too sick to say they didn’t want these things at the end of life, so they ended up on the medical conveyor belt and suffering, with their families as unwitting collaborators.
What do dying patients tell us is important to them? “Please don’t let me suffer,” “Please don’t prolong my dying,” “Please help me maintain control as long as possible,” “Please help me, at the end, strengthen relationships with my family and friends,” and “Please help me reduce the burden on my family.”
To ensure these [are respected], I think everyone should have a conversation about their wishes around dying. Often people who are dying try to talk about this but they get shut down. The family will say “Mum, stop talking like that.” It’s just that family members are struggling with it themselves. It’s important that doctors, or nurses, or their family give patients permission to talk about it.
Most people say they would prefer to die at home. But unless you have made your wishes clear, when the time comes your family will probably call an ambulance, you’ll be taken to the emergency department and you’ll probably die in hospital.
The best thing is to draw up an Advance Care Plan [“living will”]. If you write that you don’t want to be put on life support, you want to be kept comfortable and allowed to die, it avoids prolonging the process – it gives you back control. For me, it’s nice to know that my family understands if I lose the ability to look after myself and can’t communicate, I wouldn’t want to be kept alive.
An “acceptable outcome” is different for everyone. Some people would be happy if they were in a wheelchair and could be pushed outside and feel the warmth of the sun on their back. Others say if they couldn’t walk or talk or feed themselves, they wouldn’t want ongoing treatment.
Because I have that information available in a legal document, as a doctor I can appraise the situation, evaluate the condition the patient has come in with, look at all of our possible treatment options and assess the likelihood the treatment will get the person back to this acceptable outcome. If not, let’s stop now rather than put them through a whole lot.
Think about your goals and values. How does your current state of health influence these? If you were to get so sick you couldn’t communicate, for example if you had a stroke or a heart attack, who among your family or friends would you want me to turn to for guidance on what to do? In my experience people immediately know who they trust and who they would want to be involved in the decision-making – usually a spouse or a child. At the end, it helps us in hospital if we know who to contact to get a sense of where to draw the line.
An Advance Care Plan is a document that’s simply a tool. The most important thing is to have the discussion between the patient, doctor and family. Think about who you want there, what to say, where to die – do you want to be cared for by nursing staff or, if possible, go home and be cared for by the community nurses and palliative care?
We need to normalise death. In the past kids and grandkids grew up seeing Grandma in bed and then she died. But now we have medicalised death. I have seen numerous cases where people have been very frightened about dying, but after they put in writing what they do and don’t want and chose someone to act on their behalf, they found that they could concentrate on living out the rest of their lives as well as possible.
It’s important for people to communicate with their loved ones while they still have the ability. I had a patient who hadn’t spoken to her son for 15 years. She did an Advance Care Plan and on it she wrote “Please tell my son I love him.” We managed to get a copy to him and he saw it and it mended their relationship. If she hadn’t had someone sit down with her and ask the question, it simply wouldn’t have happened.
Mary Waterford, pastoral carer
The big question when you have death in sight is do you embrace living or do you prepare to die? People who ask those questions are people who have cultivated the capacity and responsiveness to change across their lifespan.
On diagnosis, it’s important to find spaces where you can talk honestly about how you feel. The people around you might not want to talk because they think it will upset you. Find the people who will support you without judgment or advice. Shout it to the moon – say what is really going on inside you, the disappointments and frustrations.
Towards the end, people start to talk about the parts of their life. Stories become really important, they identify who they are today by how they have been shaped by their experiences. As a pastoral carer I’m listening for the stories that show qualities that live on in the person today. Through their stories you can help them realise they have led a life of courage, or commitment to relationships.
Most people die in their relationships. That’s what matters to them. Often people who are very distressed eventually shape a way of understanding their hope beyond death, and that often sits in an afterlife. For some it’s a sense of going to God or a higher power. Some believe they are going to see people who have died before them. Others believe their molecules are going back into the universe. For those who have lived with the belief system that they are not going on to something more, that’s OK, whereas sometimes it’s the religious people who might have a strong sense of not being worthy who get quite distressed.
Death may bring a loss of dignity and privacy. Your ideas of where you want to die, the people you want around you, may change. It’s a very fluid feeling. It’s about being kind to yourself.
As professionals, we have to be very careful we don’t impose what we think is a good death. I had one fellow in the hospice who was clearly in the last few weeks of his life. He was only in his 50s and wanted to see his family grow up. We could see he was coming towards the end but he decided he wanted to go on a particular trial drug. That meant he had to be transported to a major hospital and had to come off his pain medication. It was very distressing to us as we could have kept him comfortable. He went through the trauma of having the drug under trial conditions and he died within 24 hours. I was standing at the end of the bed with his wife gazing at him after he died and she said: “You know, he was always a risk taker. He knew the drug probably wouldn’t do him any good, but he hoped the doctors would learn something. This was the death he wanted.”
The statement I’ve heard most often is “Have I loved enough in my life?” Having a good death is about how you live a good life. The people I have worked with have taught me how to live. They’ve shown me what truly matters.
Is someone close to you experiencing what could be their final moments? If you’re unsure what to do, how to behave, or even what to say – here are six simple rules to help you.