Abstract
Hope does not lie in a way out, but in a way through.
We are never going to die. Twenty-three years old and fresh out of medical school, these are words we had spent six years absorbing. Coupled with the immortality of youth, there was no stopping us.
Modern medicine and the art of technology leave young medical students no doubt that everything that ails us can be cured. We learn a myriad of causes for every illness and just as many ways of treating it. No patients were going to die on our watch.
Yet we learned very quickly that our patients were going to die, despite our best efforts. Unfortunately, it would take a much longer time before we would realize that death is an inevitable part of life. I remember the first patient I had that died under my care; I can still see the ward and her bed. I had assessed her earlier in the day for some mild breathing difficulties, identified the problem, and started the appropriate treatment. When I went to review her later that day, she was dying. I managed to call my registrar, then stood uselessly beside her bed unsure about what to do next. She stopped breathing just as my registrar got there, and while I performed cardiopulmonary resuscitation (CPR) it seemed an eternity until the rest of the arrest team arrived. I knelt over her, breaking many of her ribs with the CPR, while the surrounding doctors fired questions at me about her management earlier in the day. It seemed clear to me that I was being blamed for her arrest; that somehow, someway, I should have prevented her deterioration. I kept doing CPR, tears rolling down my cheeks, as I tried so hard to save a life that shouldn't have been lost. She made it to the intensive care unit (ICU), wheeled out of the ward amidst a flurry of staff. My registrar went back to the emergency department, the ward nurses cleaned up the mess, and I was left alone. Later that day I was paged by the ICU registrar. “It wasn't your fault, you know”, he said. “How did you know?” was all I could say. “You wrote the last notes. There was nothing else you could have done.” I thanked him. Thanked a busy registrar who on his umpteenth resuscitation could still see a distressed intern, who despite a frantic ICU had taken the time to let me know that it was “OK” for our patients to die.
If death is seen as a failure rather than as an important part of life then individuals are diverted from preparing for it and medicine does not give the attention it should to helping people die a good death. 1
It is not a lesson that is easy to learn. Our medical culture is that death is to be avoided at all costs. Our social culture shuns death as an event that won't happen if we don't talk about it. And so the myth is perpetuated. In second year I did my first aged care rotation. Every patient over sixty-five had a not-for-resuscitation order completed on admission, a blanket statement, with no consideration for the individual person. It was said that you should always run if a Code Blue was called, because it would be a visitor or staff member.
Third year came and I did Oncology. It was my first real experience with people who were actually allowed to die. But still it was not easy. Third-line chemotherapy, fourth-line, even experimental drugs – all pumped into frail thin arms so that death could be kept at bay. During those months my registrar and I had one of the highest turnovers the unit had seen – we were called the “black crows” as so many of our patients died. Yet even in this setting I still didn't get a sense that dying was natural.
Later that year I worked at an infectious diseases hospital. I worked on one of the AIDS wards at a time when AIDS was a universally fatal diagnosis. It was here that I finally learned about dying. The homosexual community had accepted that AIDS was fatal and supported their friends and lovers as they deteriorated. They were not afraid of dying. They could be funny, histrionic, theatrical –yet never afraid. Some died in their partner's arms, some died surrounded by their family and others died alone. Yet they were usually ready to die and while it was sad, it was a natural part of their lives.
My time there prepared me for more time in aged care. I like working with older people. Dignified, elegant, gracious, and courteous – they are special people who have learned a lifetime of lessons. So many older people are ready to die; happy to escape their frailty and limitations. They had lived “a good life” and spent time with their families and had been given permission to “let go.” We were never taught how to bring up limitations of treatment – resuscitation, transfer to acute hospital, antibiotics for infections. Yet here I learned how to have these conversations, to become at ease with the notion that there is a limit to the science of medicine. I think that this is where I also started to learn the art of medicine.
Yet the next year I was back at a major hospital, a general medical registrar out to save lives again. I spent time in the ICU, watching the numbers that apparently belonged to a patient somewhere, yet always treating those precious numbers. Making life and death decisions as I told medical and emergency teams who I would let into our hallowed halls and who I would leave to die where they were. ICU breeds contempt of those who deal with the conscious patient; we had the technology to measure every imaginable physiological parameter – why would you need to actually talk to the patient?
I don't know when I got sick of the acute hospital system. It had no heart and no perspective. I was happy to move into aged care, where we were treating people and not conditions. I learned to let my patients die. These were people who were not afraid to die, who had no fear of death. They welcomed it – pneumonia was the “old man's best friend.”
You matter because you are you
You matter to the last moment of your life
And we will do all we can,
Not only to help you die in peace,
But also to live until you die
I then spent six months at a palliative care hospital as a registrar. Surrounded by the incredibly caring and supportive team, I learned even more about people at the end of their life. This was a hard rotation – my mother was diagnosed with breast cancer at this time, and I would see her in every dying breast cancer patient. There was even one patient who I just couldn't care for – she was the same age as mum, her daughter the same age as I, and I couldn't separate them. Luckily mum is alive and well now, and we celebrate the anniversary of her surgery safe in the knowledge that she is still free of cancer. It was the first time I had thought of my mother dying. Seeing her post-operatively – pale and unconscious – she was mortal for the first time. Her mother had died in her forties; I suddenly realized that one day I will lose her too.
Working between aged care and palliative care I became interested in nonmalignant palliative care, caring for those who are dying of illnesses other than cancer. It gave me an opportunity to let those in aged care benefit from the principles I had learned in palliative care. I now teach those in acute medicine, nursing and aged care about letting people die: about recognizing that there is a limit to the human life. I have learned to encourage doctors to ask what they are hoping to achieve – would they want this for themselves, for their parents, for their grandparents.
Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light. 2
In palliative care we are sometimes involved at the time that all “active” treatment is ceased. When surgeons say no more surgery or oncologists declare no more chemotherapy. It is a devastating time for many patients, compounded by the misnomer that “no more can be done.” Yet there are those for whom this decision is a relief; those who have been suffering different forms of treatment for their family or partners, and are now glad that they can “stop fighting.” For these people, peace replaces the battle they have been fighting.
Working in aged care and then palliative care has given me a clear picture of the inexorability of aging and dying. I have watched patients and families fight death with their heart and soul, yet always lose their battle. So often they have wasted their last days or weeks full of anger at different people or hospitals, pushing away those who could help them most.
Caring for people when they are dying is the most powerful and rewarding aspect of palliative care. So many people assume that it is a depressing field, yet I have found that there can be many joyful experiences at this time. These are people who become etched in my memory for their dignity, peace, and serenity.
It amazes me, those patients who still have humour at this time. They joke with their children, their partners and their health caregivers. They may avoid the topic of their death or they may incorporate it into their mirth. Sometimes their family laugh with tears in their eyes as they realize that the jokes will stop soon; others laugh with their souls as they reflect on a life of love and laughter together, and enjoy the moments while they last.
With time and experience it has become easier to talk to patients about their death. They are usually aware they are going to die, yet are afraid to discuss it with their relatives. Most patients welcome the opportunity to talk about their fears of dying. I have learned that it is important to say death and dying to both patients and their families, and not complicate conversations with euphemisms. Once it is clear that patients want an honest discussion of death it is easy to be blunt. People are sometimes visibly reassured after discussions about death, while others seek several opportunities to discuss what lies ahead of them.
Dying patients and families allow us unreservedly to enter their lives at a time when you would think that they would be shutting everyone out. It is a privilege to share this time with people. Sometimes I meet husbands just as their wives are dying. They sit at the bedside with quiet dignity, holding hands with their unconscious wife. I can do nothing at that point for their wives, but I can sit with these men and talk. We talk of how they met, how long they have been married, and their life together. The deep and enduring love they have for their partner is etched on their faces and in every word and gesture. It makes me thankful that my husband and I are both well, and I hope that when I come to die, my husband will sit and be close to me.
Some of the most rewarding conversations are in discovering the person inside the dying shell. We often don't meet our patients until they are cachectic and fatigued – mere shadows of their former selves. It helps us to treat them as people when we see photos of them as they were and hear of their life achievements. It helps us to understand their individual sorrows as we learn more of what makes them who they are.
Death should simply become
A discreet but dignified exit
Of a peaceful person
From a helpful society
Without pain & suffering
And ultimately without fear 4
We will never know until the time comes how we will face our own death. Most of the deaths I have been privy to have been what is termed a “good death.” 1 I always thought that I would like to die suddenly if given the chance, yet now I am not so sure. To die slowly of cancer in a peaceful and supported setting allows so many opportunities that would otherwise not be possible. The chance to really say what is meant, to tell those you love just how much they matter. The time to reflect on a good life had, although tinged with regret at the vision of what is being lost. Working with dying people every day, I sometimes feel that it helps me appreciate the life I have. Yet I know that I don't value it as much as I should, and if I have to die then I would like the opportunity to enjoy every precious moment.
I still have a sense of immortality – I know that I grow older, yet I still feel immune from death. I am not ready to die; I have two beautiful sons and a husband for whom my death would be a tragedy. I don't want my sons waking up in the night asking where their mummy is. At this time in their lives, I can't imagine that there would ever come a time when I would be happy to leave them. Yet though I don't wish to die, does that mean I would be afraid of dying? I don't think I would. I understand that if I am destined to die at that time then nothing I can do will change this. I know that my family will be by my side, as they have with the minor challenges I have already faced in my life. I have faith that my colleagues will ensure my comfort. I have seen many good deaths and trust that I have learned what it takes. I hope that I would have the strength to accept my fate; I would not want to deny the inevitable. Miracles seem to be one of the cruelest myths – families unable to see reality in front of them as they focus on the impossible hope. I just hope that when my time comes I too will slide peacefully into oblivion, with a smile for my family on my face.