This is a transcription of the Magnificent Midlife Podcast interview with the remarkable Dr Kathryn Mannix, palliative care physician and author of the best-selling book “With The End In Mind” which is all about raising awareness and discussions about death and dying. She would like us all to get more comfortable talking about death. This is a long read. But it is so worth it! You can listen to the full interview here.
How the book came about
Writing my book was an unexpected happening. I took early retirement to try and do something about contributing to a better public understanding of dying, as an act of desperation. Thirty years after I first started working in palliative care, I thought people would be less afraid and know more but it wasn’t happening. People are just as afraid and I kept thinking, somebody’s got to do something about the public understanding of dying.
I had an experience of meeting a family at the emergency department of our hospital gathered in sorrow around an ambulance trolley of a man who had just been brought in. He’d collapsed at home with a really long, complicated medical history of lots of different things. The miracle really was that he was still alive. When I said to his wife and his adult sons that their dad was so sick he was probably going to die, they said they never really talked about it.
Apparently, the dad actually tried to talk to his sons and even opened the topic of sorting one of the attorney documents, but they dismissed the subject and told him not to worry about it. The mother, who was actually about the same age as the father, said they had talked about it a lot and that they should just let him go because that’s what the father actually wanted.
The father died later that day surrounded by his family. He was beautifully managed by the emergency department and the palliative care team who had been working together to do something better about end-of-life care for people who are so sick that they are dying.
I kept turning over and over in my mind how can we keep doing this just one family at a time. We can’t, can we? It’s a national problem. It’s a public health issue. We’ve got to get people talking about dying. We’ve got to get people telling their families what they want about dying.
Gradually it dawned on me, inside we all just think we’re still a teenager, but we’re not and actually I’ve been working for 30 years at the bedside of dying people in their homes, hospices and in a very big busy hospital. I might have something to offer to the public discussion.
I wasn’t quite sure how to offer it, so I took early retirement to just create some space. A few interesting things happened, one of which was a BBC radio interview. I was very fortunate that a literary agent heard my story on that and got in touch.
It all kind of rolled on from there. As in anything in life, as you’re walking through it, you’ve got no idea what the next step even is and when you look backwards, it absolutely makes sense, but it didn’t feel anything like that at the time.
Stories about death and dying
In terms of the stories in the book, I’m from a family of storytellers. I grew up having stories told to me by both of my parents. When I became the big enough sister to tell the stories, I also told stories to my younger brothers and sisters. We used stories a lot in medical training. Learning how a disease affects an individual and changes their life is fascinating.
When I was a medical student then a junior doctor, I would sometimes find there was somebody left in my mind who I couldn’t put down, that I couldn’t move away from and so I used to write them down. They are not all sad stories. Some of them are very happy stories.
The first baby I ever delivered when I was a medical student is one of them. My rule was I could only write a single side of A4 so that it didn’t get self-indulgent, but I was just writing it out of my head. Of course, I couldn’t write real names down so they were dated, but there were no names on them.
I just kept them and filed them away. Sometimes I would get them out and re-reading them as an older doctor and knowing more, I would notice things I hadn’t noticed at the time. So they’ve kind of grown in my memory, even though they stay the same on the page.
Some of them have been used for teaching medical students over the years or junior doctors. It meant I actually had a set of observations to call upon when I was writing. One of the things that was fascinating was how when I’d be reading the observation sheets, I’d suddenly remember this whole day of the patient. These little moments in time and how they interacted with each other and funny or sad things that happened.
It is lovely to have these snapshots because they are a starting point for remembering other things as well. It’s how we make sense of everything, how we make sense of our own life, how we make sense of people that we know, that’s why it works.
Finding the right words
I think grieving people absolutely have the right to choose whatever words get them through, that’s not for us to control. But unless we use the language of death, we’ll lose it and it’s very difficult to talk to somebody about the process of dying without that language. That’s really what the book is about, that there is a process to dying, that it is recognizable, describable, anticipatable, and to some extent, manageable.
We can’t talk to people about that if we can’t use the “D” words. We are talking about dying, we are talking about the time when you are close to death, we are talking about how we are going to manage as you die. We are talking about how your family will be when you are dead. It’s really important to use the language. You can use passed and passed away, in a completely flippant way or you can use it in a very gentle and kind way. You can use death and dying with absolute gentleness, kindness, and love.
I think love is another one of those words that we don’t use because it is embarrassing but I think also this is a book about love. This is a book about dying people, people they love, and the people who love them. It is also how love is part of the service of good healthcare practitioners, that it is not an emotion but it’s kind of a decision and it’s a way of acting. We call it kindness when it’s between strangers but it’s actually about love. I think we’ve got to get back to using the language and stop being embarrassed about it.
Coping with denial
There is a story that I told during my radio interview and it was about Sally. Sally was such an extraordinary experience for me because I first met her when I was still a cancer research doctor. She was having an experimental treatment for her cancer and then I met her again when I was quite a young hospice doctor and she was terminally ill and in complete denial.
She was a great illustration of denial. If you really do not believe that the thing that everybody else thinks is happening to you, then you won’t feel all of those emotions that go with believing that.
Denial is an emotionally safe place and that is something we’ve got to recognize, that people are not always accepting and coming to terms with what’s happening. If someone’s in denial, that’s fine for him, but it’s not fine for the people around him who know there are things they want to say.
It’s certainly not fine as I’ve seen in the past if it’s a new diagnosis where treatment is possible but the person won’t believe they’ve got the illness and therefore they won’t accept the treatment and that could be very difficult.
People who are doing denial until the very end of life maintain their comfort. The difficulty is for most people it gradually becomes harder and harder to maintain the illusion that there’s nothing wrong as more and more difficult things happen. Gradually the denial starts to crumble and as the denial crumbles, you’ve then got to deal with the emotional load of realizing what’s really happening.
That can be very difficult and it’s actually easier to do that a long time in advance. This particular person, Sally, actually managed to stay resolute in her denial until twenty minutes before she lapsed into unconsciousness at the very end of her life. She was still telling the people in the bedroom, I’m gonna beat this thing. She maintained her composure throughout.
The thing that was really difficult was it meant that her parents and husband couldn’t say goodbye. We had to find ways of enabling them to tell her all the things that were important to them, how much they loved her, how proud they were of her. They were like a family reminiscing around the bed while waiting for somebody to get better rather than saying goodbye. It was very very hard.
One of the things that was very touching for me was probably the last year before I retired when a very senior consultant who had been one of my mentors, became my patient. I became one of his companions at the edge of life because I wasn’t just his doctor, I’d been his trainee. He was one of my personal heroes. He was teaching me from his death bed.
How fantastic that he was using his experience still to sculpt me into the best version of a doctor in palliative medicine that I could be. It was absolutely such a privilege. That was his nature, he was a teacher; another amazing storyteller and artist so he told stories visually as well. There’s something about people who look after their companions that’s really interesting and very special and lots of people do it.
A lot of people feel sad that they will never feel normal again and by that, they might mean I’ll never not have pain again which is obviously where palliative care first started. Also, I’ll never feel sad again or I’ll never not feel anxious again. Being able to help them with their emotional distress and resume some sense of control is really important.
I think it is a very privileged position if you’re a companion of somebody dying, but you’re not part of their close inner circle of friendship. We are able to have conversations they perhaps feel too difficult to have with close family around, yet we’re having the same conversation with close family in a different room.
There’s a story in the book of an elderly couple who were protecting each other. When the husband opened the door for me because I had come to do nausea or vomiting consultation, I hadn’t come to do an end of life consultation, he took me to the living room and told me that I was not to tell his wife under any circumstances any bad news.
He then took me upstairs to meet his wife and she sent him downstairs to make me a cup of tea. As he’s going out of the bedroom, he’s making signals behind the door like “I’m watching you.” As soon as he’s going down the stairs, she’s saying, “I don’t know what to do. He doesn’t realize how sick I am. How can I tell him that I’m dying?”
These people who just love each other but don’t want to upset each other and it’s a really common thing in palliative care. It is a very emotional thing to do but it’s really helpful for patients of families if that’s what they want. Some patients do not want to have to carry the emotional burden of their family’s distress.
It’s about engineering a solution that makes the interfering palliative care feel happy. It’s about understanding what’s going to be the solution that’s going to help us support this person the best.
Understanding the process of dying
I suppose one of the things that’s quite important is that we recognize that we are all going to die. That sounds very basic but we do spend some time with no notion at all that dying is a thing that might happen to us. Obviously, it happens to other people, it happens to old people, it happens to people on the telly.
Recognizing that we are going to die is the first step in recognizing that actually, therefore, being alive is a precious thing and it’s a special thing. There’s something about using it well for the things that matter to us and that will be very different from person to person. It’s about what matters to us that makes it special.
Understanding the process of dying is really helpful. To know that it’s not like on the telly and it’s not like on Hollywood is a really helpful thing, because death is used as a device in drama where actually what’s happening is not to the person who’s dying, it’s for the characters around the bed, to help them move on.
We don’t see dying depicted well. I get really mad about this. Understanding that dying is a process like giving birth is a process, your body is gonna go through a sequence of changes that will be pretty predictable from one person to the next.
Anyone who’s given birth to a baby has had an individual unique experience, but whatever the midwife will be seeing is the same old – same old. I think that dying is the same. Of course, it’s different because every person is different and the people around them are different but the process is very similar. If I’m so sick I’m going to die, I want to be able to talk to people about where I want to be, how much treatment is too much treatment, how much treatment is not enough treatment.
There’s a lot of misunderstanding about the process of cardiopulmonary resuscitation (CPR). Your target audience very often are the people who are caring for older relatives who are approaching the end of their lives. At the same time, we are trying to explain to younger relatives who are the generation below. It’s really challenging.
Helping us to understand what is and what isn’t likely to happen at the very end of somebody’s life can help us to decide whether we can commit to bringing somebody to live with us for the terminal illness for example. And what questions to ask before we commit to that because we can maybe manage that for a weekend or a week or if you got plenty of help maybe a few weeks, but what if it goes on for months, or years.
So we do have to think about what our resources are and what the implications of doing that will be on the other people in the family, is we bring a dying relative into the house. I don’t think that’s an entirely negative thing. I think it can be a really interesting helpful experience, but it’s not gonna be the same home life that they would have had.
One of the things about that is that it depends on the illness, for example, if somebody is dying from something that has a relatively predictable trajectory, cancer is probably, one of the most predictable trajectories. Some of the neurodegenerative illnesses, motor neuron disease, in particular, they tend to change at a rate that once it establishes itself is noticeable and anticipatable for that person.
If you think about us in our midlife prime as we are, I know that I am not running as fast now as I ran ten years ago. There is a change in me over a decade that’s noticeable so that probably means I’m measuring my life expectancy in decades. The time will come when my running times are going to be a deteriorating year on year and then I know that I’m measuring in years not decades.
If I have a serious illness where actually this month I’m not as strong as I was six months ago, then the changes that are happening within a year and now we’re talking about months into years and by the time changes are observable, month by month. We’re talking about counting in months.
Then we find people who are wearier and wearier even week by week and so now we are talking about weeks into days possibly. It’s a way of guesstimating by watching what’s happening to this person. There are illnesses that are more predictable than that and I’m thinking about particularly if you got really elderly relatives who managed to collect a whole assortment of illnesses.
The thing that is difficult about that is that it tends to be a very slow decline, a gradually sloping hill rather than a much more obvious decline, for example, end-stage cancer. You can have a crisis where the elderly relative is rushed into hospital and they almost die but now they are not well enough to get back to their own homes, now what are you going to do? I always promised my mom that she will never go into a home but actually I haven’t got a spare room in my house.
Someone has to sleep on the sofa if we bring mum with us but we can manage that for a few weeks but actually, mom might be going to survive for months and months. Those are the sorts of conversations that it kind of feels callous to be having with the doctors, nurses, and social workers and yet we can’t make an arrangement of who’s gonna look after mom, look after mom’s grandchildren, who are trying to look after everybody if we don’t sit down and think about it really honestly and carefully from the very beginning.
Sometimes logistically, love is not enough. We’ve got to be really practical and if this is going to be for the long haul, our job might be to continue to be the loving relative and not the exhausted carer. Sometimes letting the other people take the caring burdens so that we can continue to pitch up and maintain our relationship with that person and all of our other responsibilities might be the way of doing it but it makes people feel terribly guilty.
Going back to the analogy of understanding about birth and giving birth, what happens is fairly soon after we have a positive pregnancy test, we get into a system that starts to prepare us for delivering a baby. It tells us what to expect in a way that doesn’t leave much room for doubt with diagrams and videos. People will also talk about the sensations you’re gonna feel as the baby’s head is coming down, what contractions are going to feel like, how you’re going to push, how you’re going to pause, what you’re doing with your breathing, how you are going to manage the pain control.
Midwives are great, they have women writing a plan and they don’t laugh. They have a completely straight face even though they know all the different ways that we might end up not being able to do this plan. What they’re really doing is getting you to think about what it will be like when you’re in labor and giving birth to this baby. You really can’t plan how to give birth if you don’t know what giving birth is going to involve. I guess that’s how I feel about preparing people for dying.
Here’s our kind of midwife introduction to dying. It doesn’t really matter what illness you’ve got, towards the very end of life, that final sequence is very similar. Largely it’s about our bodies running out of energy, so we’re weary and we sleep a lot. Sleep recharges our energy batteries a bit. We can be awake again for a while but gradually, the amount of time we can stay awake gets less, compared to the amount of time we are asleep, which gets more.
If the disease we’ve got isn’t interfering with our mind, then we’ll be our normal usual self when we are awake. If we’re looking after a relative who, for example, got dementia, it will not accelerate in a rest period, if they could still recognize you when they were awake, then as they go into the stage of sleeping more and waking less, they’ll still recognize people when they are awake. As time goes by, we find people are asleep more and awake less.
An interesting thing that happens that the person it’s happening to doesn’t notice, but the rest of us do, is that sometime during this period of not being awake for long and being asleep a lot, some of them sleep deeper into unconsciousness. When the person wakes up, they tell us they’ve had a lovely sleep. We know that human beings don’t recognize when we become unconscious, which is probably why it’s called unconscious.
That would normally be the phase where you might change the way somebody takes their medication because you notice in the background something might be causing them to have breathlessness or pain or nausea. They are usually on regular medication to keep those symptoms away and we don’t want them to miss a dose of that. Very often we change to using injections at that point. It’s the same equivalent dose and the person isn’t becoming less awake because they are having injections, it’s the illness itself that’s gradually taking away their ability to stay awake.
Eventually, the person is just unconscious all the time. Once we’re unconscious, what’s actually happening is that all the different bits of the brain are switching off. Once we’re completely unconscious, the only bit of the brain that is still awake is this bit that drives our breathing which is right at the bottom of the brain. Everything above that has been switched off.
The breathing center gives us a breathing routine that’s completely automatic like a reflex. When we’re unconscious, it’s this automatic cycle and it goes between deep and shallow, and fast and slow. As we breathe out, because we’re not conscious of the position of our muscles any more, the muscles in our larynx might be a little bit closed over, so as we breathe out, we might make a noise. If you didn’t know, you might think that person is sighing or groaning or trying to talk. It’s really important that the family sitting around the bed understands that it is a sign of unconsciousness, not a sign of distress.
Similarly, there could be phases of the breathing where it’s quite fast but it’s shallow, and that would look like panting and you might think that person is breathless. During the very slow phases, there could be long pauses and when the breath comes, it’s like a gasp and you might think that the person is gasping for breath and struggling. It’s really important again that people understand these movements between deep breathing, shallow breathing, fast breathing, slow breathing and noisy breathing are all just a reflex driven by the brain.
Another thing that happens mostly with people who are in bed, they’re usually lying back and there are bits of saliva and phlegm that come up from their chest lying at the back of their throat. They don’t clear their throats. If this person is letting fluid lie at the back of their throat, we will hear the air coming in and out of their lungs making a bubbling noise which sounds like a clicking noise.
People talk about it as the death rattle. This is a sign that they are so deeply unconscious that they no longer have the sensation that then triggers this kind of reflux coughing and spluttering in their throat. People talk about the death rattle as something terrible because it is really weird to listen to. Normally, if we have somebody who’s deeply unconscious, we put them in a recovery position particularly to stop fluid lying at the back of their throat.
At the very end of somebody’s life, they may or may not make a rattling noise, but they will be breathing very gently. It will be quite slow; there will be pauses and then there will just be an out-breath that doesn’t seem any different from any previous out-breath but just doesn’t get followed by another breath in. There’s nothing special about it at all. It’s very peaceful. There’s no sudden sitting up telling people where the treasure is buried or anything like that. There’s no sudden rush of pain or choking or panic; it’s just very gentle.
The importance of good palliative care when needed
Some people will remember the deaths they’ve been at and then they’ll say, I thought what we saw when my mum died was unusual because it was so peaceful. We never tell people what it was like because we know it’s normally so awful and we don’t want people to feel bad that we had such an easy time because it was so gentle for our mum. I tell them that I really want you to go tell people about how your mum died, because what you’re describing is normal dying.
Actually, the more of us that understand normal dying, the better. If we all knew what good, safe dying looked like, then we wouldn’t tolerate somebody having escalating discomfort or increasing breathlessness or a sensation of panic as they are dying. We would know it’s not normal. We shouldn’t be putting up with this. We should be getting somebody to help with this because it’s not okay and it doesn’t need to be like this.
If you have an illness that causes you pain and distress, then those pain messages are coming up sensory nerves into the brain and even though the brain is starting to shut down, those sensations start to trigger awareness, they start to trigger alertness and so they slow down that descent to unconsciousness. So the more somebody has pain, for example, the longer it will take them to reach that point of being down to only the very last breaths being driven by the brain.
Having good pain control allows the process just to proceed normally. There are some people who have no pain at all; their illness is not an illness that causes pain. There are other people who have pain and that sequence of events will not be as smooth as that. The pain keeps interrupting it.
So if you’re living in Sub-Saharan Africa, where only 1 person in 50 has access to morphine if they need it, then dying will take longer because it is so uncomfortable. The discomfort keeps waking the person from the unconsciousness that the brain is trying to withdraw into.
We’ve got a real problem around the world with the availability of pain relief. It’s being made more difficult by the emphasis of the Americans on their opioid addiction epidemic, because they are trying to influence the World Health Organization to limit the availability of opioids around the world. The rest of the world is actually desperate for laws that allow better access to medicinal opioids.
One of the myths about morphine is that it kills people and it shortens their lives. If you’ve got a pain and you take a morphine, and the morphine takes your pain away that seems to happen instead of getting a high. You don’t get that emotional addiction when you’re taking morphine for pain. If you’ve got pain, it’s naturally maintaining your brain to stay awake and breathe even if you’re taking morphine. In fact, once you’ve found the dose of pain killer that stops the pain, the dose doesn’t change very much after that.
We don’t see people dying of morphine suppressing their breathing, as can happen with people who are taking morphine who haven’t got a medicinal need to take the morphine. Morphine is a really safe drug if it’s used well and properly, if it’s the right dose at the right time and the right person. There can be a lot of fear about it, but actually if it is used properly, it is completely safe.
Understanding the wishes of the person who is dying
Dan is a young man who had muscular dystrophy. As he was growing up, as a little boy, he gradually lost muscles in his body. It became more difficult for him to walk and more difficult to move his arms. Gradually, by the time I met Dan in his early 20s, he was using an electric wheelchair and his movements were very limited. He always had good movement in his facial muscles so he was able to talk very clearly.
Dan was a very deep thinker. I first met Dan because he was profoundly depressed and he’d been referred by his GP to a local psychiatry team for treatment of his depression. Somebody from the psychiatric team came out to meet him and they don’t normally deal with people who have physical illnesses. He was somebody who had a terminal illness who wanted to commit suicide not so that he didn’t have to die of his illness but just because he was so depressed that he didn’t want to be alive anymore.
The assessor wrote a really helpful report and went back to the GP and said this person needs somebody who understands psychiatry in a physical health setting. Dan was referred to my clinic; I ran a cognitive behavior therapy clinic in a hospice. It was an absolute pleasure to meet him. He was a little bit older than my own son. He was in that phase in young adult life where most adults are completely stupid. Dan told me he’d been trying to think about how he could commit suicide and he thought about driving his electric wheelchair into a lake to do that. The difficulty was he couldn’t get in deep enough.
Gradually he got better; he was great with the cognitive therapy. He really learned to notice his unhelpful thoughts, to challenge them and give himself opportunities to succeed. He had a big circle of friends in the virtual world because he played computer games a lot. In computer games, everybody is equal. If you can manage the Xbox controller then you are as fit as any other player, so he could run, jump, shoot and whatever it was in these games. He was really good. He had this great rich social life through his computer.
Gradually, his depression got better but of course the difficulty was that, although we had helped him to no longer want to be dead because of his depression, the fact was, his disease was progressing and he would soon be dead anyway. But he had this period of time in between where actually he wanted to be alive. He relished being alive but he felt that maybe in some way, he didn’t have a mission in life, that he was not going to accomplish anything in life.
One of the things we’d done to help him feel less out of control was to think about what treatments he would and would not want to have towards the very end of his life. Dan understood, for example, that when he came to that phase of life, he would gradually become less conscious, less awake, and eventually his breathing would stop. That’s not the same as young man with the same age as him being well and then suddenly having a catastrophe where his breathing and heart would stop. Cardiopulmonary resuscitation as an emergency response is something that could save that young man’s life until he could get to hospital and have treatment. That wouldn’t work for Dan.
But an ambulance finding a young man in a state of collapse, even a young man with a wheelchair beside him, would have no way of knowing that and they would start cardiopulmonary resuscitation. Dan wanted to have a “DO NOT ATTEMPT CARDIOPULMONARY RESUSCITATION ORDER” to protect him from being interfered with as he was dying. He also wanted to write an emergency healthcare plan so he could stay at home when he was dying. He had this really complicated set of instructions.
At the time we were pivoting a new system for the whole of the Northeast of England where he lives and I work, where instead of having a different set of instructions for every organization that might look after you, you have a single set of instructions kept in a bright yellow envelope by the patient, and wherever you go, the instructions go with you. This was a national first to have a single set of instructions accepted by every healthcare and social care provider across the whole patch.
We were about to have this big launch and there was gonna be telly and radio. I couldn’t imagine some doctors on the telly waiving a yellow envelope and saying “hey guys you all need to do this.” One day, Dan sitting in my clinic suddenly said “You know I’m gonna leave this world and I really want to make a difference.” He became our poster boy for our emergency healthcare planning Do Not Attempt CPR orders and everything else across the whole of the region.
The television people came to him, as well as the local and regional radio stations. He did a fantastic job and made a huge difference. In fact, after the book was written, he went on to test his own emergency healthcare plan. He went to the hospital with a chest infection. He did end up in an intensive care unit. Having had all those preparatory conversations, the consultants in the intensive care unit knew exactly how to pitch the conversation with him. He was able to make decisions and say yes and no to things. He was able to get home in order to die in his own home. It was an absolute tribute to him and his mum that he managed to do that. He was absolutely one of my heroes.
You ask about the impact of having faith at the end of life. What I have observed is that towards the end of life, people who know they are dying or even who know they are getting older, who realize that time is becoming limited, start to make a reckoning of what their life has been worth. They measure that against the system of values that’s important to them. For some people, that is a faith system.
It might be how good or faithful to my religion I’ve been. It also might be how much I lived up to my values of wanting to save the planet and live a green life, for example. Our personal view of our worth is measured according to our belief system. If people have been very devout to a particular way of looking at life, they find that very comforting. People who are very devout often believe that after death, there is a thing that happens that is safe and comforting; apart from the ones who are worried they haven’t been good enough, who then feel very frightened. Faith isn’t always helpful. Sometimes actually it’s quite scary.
People who believe there’s nothing after death, devout atheists who are sure there is oblivion, can feel sad about oblivion, but are comforted that they do not have to worry about something else that they are not prepared for afterwards. The rest of the world sits somewhere in the middle. They don’t quite know whether to embrace it more fully or put it aside as not worth it. It’s really interesting how having a well-formed set of beliefs in something or nothing seems to be more helpful than just being lukewarm and in the middle.
My final advice to everyone is to make sure that the people who are closest to you know what you would like and what you don’t want to happen. If they ever have to make decisions for you, give them the gift of being clear about what you don’t want. Don’t wish you’d done it. DO IT!
Find out more about Dr Kathryn Mannix:
Website: With The End In Mind
You may also like: When A Little Bit Of Faith Could Really Help
Dr Kathryn Mannix qualified as a doctor in 1982 and has worked in palliative care since 1986. She is currently a consultant in palliative medicine at the Newcastle Hospitals NHS Trust. In the early 1990s, she also trained as a cognitive behavioural therapist and launched the UK’s first dedicated CBT palliative care clinic. She’s also been involved in NCPC and Dying Matters events over the years and has been a long-time advocate for better end-of-life care.