Last month palliative care specialist Ghauri Aggarwal spoke at a seminar on palliative care and assisted dying organised by MercatorNet at the New South Wales Parliament building. This is a slightly abridged version of her presentation.
We are lucky to live in the 21st Century. Curing and prevention of disease and prolongation of life are achievable. We look to medicine to save our lives and to live longer.
The consequence, however, is that the community expects this, even demands this. And if it is not available they are terrified.
What is it that they are terrified of? Dying badly, dying without control.
People often ask me why I chose Palliative Care as my medical specialty. I was drawn to this area of death and dying when I was a medical student, even before it was recognized as a specialty in Australia. Palliative care had certainly been practiced in hospices and hospitals for decades but it was not mainstream medicine or a discipline of its own.
Even as a student I saw that people at the end of life were not adequately cared for, their dying was often not diagnosed, and distressingly they were avoided by doctors if they did not know how to care for them. When the rest of medicine was rapidly moving forward, the dying were often neglected. Their suffering was not a priority.
As a young clinician I saw the art of caring for people. I witnessed the distress that disease, symptoms and the terminal state may bring — not to all but to some. What I learnt was that I had a precious commodity: time, conversation and the building of trusting relationships. I then laboured hard to marry the science of medicine and the art of caring.
After 22 years as a senior palliative care specialist, I know the tremendous healing power of my relationship with my patients. My expertise is needed to help, to heal, to comfort, to palliate. We palliative care specialists need to educate all health care workers.
Often pain and other symptoms are cited as the biggest areas of concern for people approaching the end of life. But significant advancements have occurred. Patients are often surprised that pain and symptom control can be managed well until the end. We have the ability through good, evidence-based medicine, determination, and expertise in using drugs.
But the suffering that is most common at the end of life is usually beyond physical pain. It is the fear of losing independence, the fear of being a burden to others, the fear of dying.
Let me give you an example.
A thin, cachectic woman dying from bowel cancer lies in our palliative care unit surrounded by her daughters. There is laughter in the room, chatter of memories from before, love and stories.
When I walk in, the atmosphere changes to a serious one. “I want it to end now,” she says. “I wish you could do something for me. I don’t want to carry on.” We spend the next half hour or so teasing out the symptoms, the pain, and the fears. She does not have much pain, although she is weak and tired, so we adjust the medication. She is a lot more comfortable now.
After we walk out, the laughter, conversations, and memories continue. And every time the nurses or the social worker or the doctors walk in, the request is repeated. Soon there is banter between patient, staff and family.
The request is less robust now. I suspect that she is saying it out of habit. The family continues to keep vigil. The daughters say: “This is a precious time for us with Mum. We’ve talked about things that we had forgotten. We remember now.” She dies a few days later.
We hadn’t dismissed her request; we hadn’t avoided her room. We engaged with her and she began to trust us. Her original request was because she feared losing her independence, being a burden to the family and staff and not being as active as she once was. She endured and continued to engage during a very precious time. She was comforted by the certainty of knowing we would be there to provide the care she needed. For her daughters their bereavement will be easier because they were able to spend that precious time with their mother.
A web of care
Over the last three years our department has looked after 1,200 people who have died — 400 deaths every year, at least one every day. The experience that my staff and I have is significant. And despite the large number of people we look after, 99 percent of our patients will never ask for their lives to be ended prematurely. And if it is mentioned once, often it is not repeated.
Palliative care requires experience, expertise, communication skills, and a deep understanding of patients’ true fears and concerns. It is a relationship of trust. If this sacred trust breaks, the healing, the care, and the expertise are lost. So much can be gained by this trust, and so much lost if there is fear instead of trust.
The story of M
When I met M, she said to me, “I know I have cancer, I know I have a short time to live and I want euthanasia. I come from the Netherlands, my son lives there, I have no one here. If I was there, I would be able to, but I’m here, so help me.”
She looked well when we first met. Over the next few weeks we met on a regular basis. She decided that she would not accept further treatment and that was an appropriate choice for her. She decided what medications she would consider.
I got to know her as a person. Every time we met she would say, “when the time comes I will have euthanasia.” We talked about her goals and priorities in life.
She was terrified of dying in pain and terrified of dying alone, a burden on people she did not know to have to take care of her. Within a month of the diagnosis of lymphoma (a potentially treatable disease, but she decided not to have any treatment, a choice we supported), she started to become weaker.
Our conversations grew deeper and I understood her more, but she still asked for euthanasia on most occasions. Her son from the Netherlands came and went back home. She did have pain but she accepted pain relief.
And then she stopped requesting euthanasia. She was not in physical pain; it was the notion of “on her own terms” that she wanted. In the end she died under our care, not neglected, not abandoned, not alone and not in terrible pain.
Because euthanasia was part of the care offered in the Netherlands, there was an expectation that she would and even should request it. She wasn’t aware of the alternatives. Our conversations explored her fears, her care needs and her options. She was comfortable with this at the end, but it took time, effort and expertise.
What if her life had been truncated because she believed that it was expected of her, even before the symptoms emerged and even before she needed care?
Who asks for euthanasia?
As I said, of the thousand patients that I care for each year, very few ask for euthanasia or physician-assisted suicide. Most ask us to stop aggressive treatments that aren’t helping them or that are causing side-effects. Sometimes they are frightened of the end and want reassurance of care or they insist on a natural completion of life. “Don’t do anything to prolong my life.” they say. This is appropriate; this is a good choice for them. This is not euthanasia.
“You wouldn’t let your dog or cat die like this, why can’t you end it now?” the daughter of Mr N screams. The wife sits by his bedside exhausted. The vigil continues. He is not in pain, he is asleep, he is not agitated, but there is grief in the air. The daughter asks again and then she says, “I can’t take this” and runs out. The mother comments, “she is struggling but he would never have wanted it” (euthanasia, that is). “I cherish the time we have together till his last breath”.
There are many agendas in that room; the dying man, his wife, the daughter, the doctor, the nurse. Whose voice is the loudest? Who dictates what should happen? This is often the scenario. The request does not originate with the patient but with the grieving family waiting for the pain to end.
So, when the community calls for the premature termination of life, let us remember the grief is often our own personal loss, our own sorrow, our own fears.
When those rare requests are asked of me, most actually come from relatives of dying patients. There is grief, there is sorrow and it is deep and difficult for them to bear.
But our relationship reassures them that we will never abandon them. They become more comfortable in their dying weeks and days with this empowerment. They don’t ask again because we have a care plan; we have developed a relationship; we have responded to their deep fears. Often with the touch of care and the art of deep conversation, a tremendous trust is built up that becomes hugely therapeutic.
The suffering does not go away completely but patients find answers, care and the strength in the relationships that they still have.
The myths surrounding palliative care
There are so many fears and myths around palliative care. This is what we face more often than a request to end one’s life. The fear of starting morphine, the fear that palliative care means euthanasia, the fear of not having everything done for them.
There is increasing research and evidence in this area of medicine that show these views to be incorrect. But the myths prevent patients from accessing the good care and expertise that they need.
Many patients come to us with the thread of trust and faith in health care already broken and frayed because of broken promises of a cure or longer survival or toxic treatments. Most are due to a lack of honest discussion, expertise in deep conversations, dismissing of what cannot be fixed.
It is our job to repair these fractures. Time, education of colleagues and resources are required. Surely this is important, worth investing in, worth finding resources. This is my call for action: let us care for people, not end their lives prematurely because our society cannot budget the time, resources, and expertise for this vital work.
Voluntary assisted dying is the ultimate medicalisation of death. It is added to the list of clinical options when doctors lack the time and expertise to deal with complex suffering. It becomes an easy, off-the-shelf procedure for time-poor, resource-poor, expertise-poor physicians. Is that the kind of society we want to live in?
The golden thread of trust between patient and doctor must never be broken. If the option of prematurely ending lives become available, this will increase the fear for most of our patients. It will prevent me from developing this vital trust with all my patients.
This thread of trust gives comfort, security, and symptom control. And those few that still suffer will not be abandoned. We will continue to walk beside them in the most private and vulnerable journey of their lives.
Associate Professor Ghauri Aggarwal is Head of Department, Palliative Care, at Concord Hospital, in Sydney.