By Assoc Prof Megan Best
Palliative care is defined as an approach to healthcare that improves the quality of life of people with a life-limiting illness. It helps them live as well as possible for as long as possible. Palliative care also provides support for families and carers. It does this by providing more than pain relief: the physical, emotional, and spiritual needs of the patient are all considered important concerns in palliative care.
As a palliative care doctor, I have been involved in helping my patients achieve all sorts of different goals, whether travelling to ‘bucket list’ destinations, learning to paint, or just to keep cooking for their family the way they have been doing for decades. The needs of the individual can only be identified by asking them what is important to them – and being an advocate for the patient is part of the staff’s role.
Palliative care is about living as well as you can for as long as you can. It’s not just for the very end of life. However, it seems that this is not widely understood in our community.
It takes a team approach to help a patient and their family and carers to cope with the challenges that come as disease progresses. Palliative care teams are multidisciplinary: nurses, doctors, physiotherapists, occupational therapists, chaplains, social workers, and other healthcare professionals who have the expertise to help in all aspects of care.
Community-based teams look after people living at home, providing support and equipment so that people can manage at home even if they develop some physical limitations. Modern, quality palliative care can have a big impact on the end-of-life experience, significantly reducing pain and suffering.
But not always in the ways you might think!
Spiritual wellbeing and ‘the existential slap’
While there are many benefits of palliative care, what I would like to focus on here is the prominence that it gives to spiritual wellbeing.
Modern palliative care emerged in the late 1960s through the work of Dame Cicely Saunders, widely acknowledged as its founder, in the United Kingdom. She believed that caring for people requires caring about them. She combined the tradition of hospitality in medieval religious communities (hospice) with modern medical techniques for treatment of symptoms.
Dame Cicely would sit on the end of the beds of terminally ill patients and record their stories. As she studied these accounts, she found that the suffering involved was due to not only physical pain, but also social, emotional, psychological and spiritual aspects. She talked about multi-dimensional or total pain. As she reintroduced a model for a ‘good death’ to Western society, she placed particular importance on the care of the spiritual dimension of the human being.
Because, at some point, the spiritual dimension must be acknowledged. The realisation that one’s life is finite has sometimes been called ‘the existential slap’, and it comes sooner or later to everyone.
A diagnosis of a terminal illness is known to precipitate the asking of big existential questions such as Why is this happening to me? Where is God in my illness? What will happen after I die? How will my family manage without me?
Research has shown that if individuals are unable to answer these questions, then existential, or spiritual, suffering can ensue. Spiritual suffering is a complex and potentially devastating condition. It can be difficult to diagnose and can even masquerade as physical pain. I think it is this type of pain that people are often referring to when they say that some pain at the end of life is ‘unrelievable’. It is certainly unrelievable if you rely on medication to take it away. Not even palliative care experts can relieve this type of pain with medicine.
I think one of the reasons it is important to include the palliative care team in someone’s care as soon as they are diagnosed with a terminal illness is because the spiritual side of the individual is given attention.
The palliative care team usually includes a pastoral/spiritual carer, or chaplain, who can talk about the spiritual challenges and help an individual work through those big questions. Other team members may also have training in spiritual care. Spiritual concerns can be difficult to address, but the work is more than worthwhile. When someone has been able to work through the big questions and find answers for themselves, then the spiritual wellbeing they experience can be as important as physical wellbeing when it comes to improving their quality of life.
In these cases — as has been borne out in research with advanced cancer patients — wellbeing means the ability to die with a sense of peace. They can heal spiritually even as their bodies waste away. What a blessing. Surely, it’s what we all want for our loved ones and ourselves.
The recently released National Palliative Care Community Survey found that, while 88% of respondents think it is important to start thinking and talking about their wishes and preferences for care if they were to become seriously or terminally ill, 50% of respondents have done nothing about it. The main reasons for this delay were because they believed that talking about their preferences for the end of their life would upset their family and because they found the topic of death and planning for the end of their life too difficult to talk about.
These conversations often focus on choices like if the person wants to be admitted to Intensive Care if they deteriorate or where their preferred place of death is. But the spiritual questions also deserve attention if spiritual suffering is to be avoided.
Spiritual wellbeing improves quality of life wherever you are in its trajectory. But if you are facing death, there is help available. Call the palliative care team.
A/Professor Megan Best is a palliative care doctor, researcher and bioethicist at Institute for Ethics and Society at the University of Notre Dame Australia, and Meaningful Ageing Australia research consultant