Pastoral Letter on the occasion of Palliative Care Week 2021
Bishop Mark Edwards OMI, Bishop of Wagga Wagga
My dear brothers and sisters in Christ,
I am writing to you today about a matter of utmost importance to our community: palliative care.
This letter’s purpose is:
- to develop an understanding of the role of palliative care service for our community;
- to equip us to engage when this situation arrives in our lives or those of our loved ones; and
- for us to be open to and desire palliative care if circumstances make it necessary.
I write in the context of the re-introduction into the NSW parliament of Voluntary Assisted Dying (VAD) or euthanasia legislation.
Palliative Care: A pro-life and pro-human and Catholic stance
Each of our lives is precious and God values each of us to death and beyond. We are made by love and for love and witness to and celebrate this by defending life from conception to death and with the respect we show towards those who have died.
The goal of Palliative Care is to help patients experience dignity, comfort and maximise their quality of life including attending to a patient’s psychosocial and spiritual needs. We journey with the suffering and dying in a way which manages their physical condition, while recognising and reverencing the dignity of who they are. Death is a normal part of life and palliative care ensures that people have a say in where they will die and in the care they will receive as they approach death.
Palliative care is an important way of showing respect and building a culture of life. It accepts our death as part of the overall mystery of our lives and does not seek to unnecessarily lengthen life nor to hurry death. It is pro-life and a part of our Catholic tradition of health and aged care.
So what is Palliative Care?
Many of us don’t really know what palliative care is and some may fear it even more than death itself. Our fears might include: Are we going to be controlled or told what we have to do? Will our treatment be onerous and forced on us? Will we have to live longer or shorter than we should? Or to live with pain and little dignity? Or die alone in a hospital?
One of the great myths about palliative care is that it is only a synonym for end-of-life care. It is so much more than that. It is holistic and comprehensive and is different for every person because it is personalised.
The World Health Organization (WHO) defines palliative care as “an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial, and spiritual”.
Patients requiring palliative care services can make their own choices and decisions about their medical care and how much treatment is wanted. Ideally, we do this supported by people we trust. Palliative care is provided by expert clinicians, largely in the community and home setting, but also in an inpatient setting such as the Specialist Palliative Care Unit at Calvary Riverina Hospital and at the Forrest Centre, for public and private patients. It can support us in our preference to die at home, in a hospital or other managed care setting, and ensure that our Advanced Care Directives, which set out things like our resuscitation orders and artificial feeding orders, will be followed.
Palliative care does not set out to make our life longer or shorter but rather helps us live as well as possible until we die. It is not euthanasia. If there is treatment for our medical condition, we will still get it if we so choose.
A cornerstone of palliative care is to reduce pain and to address other severe or debilitating symptoms (such as constipation, insomnia, nausea, depression). This is provided by a nurturing, supportive network of highly-trained healthcare professionals, particularly in the context of either an end-of-life situation or when an individual is suffering from a progressive condition that cannot be cured. Many patients admitted to a palliative care inpatient unit, such as the Specialist Palliative Care unit at Calvary Riverina Hospital, are discharged home after symptom stabilisation with palliative care follow-up in the community, in combination with their own doctor’s involvement. Of course, the inpatient units also provide a critical hospice role for patients who are close to death and unable to manage at home.
We don’t need to die in pain. There are some very effective treatments for pain available now; the palliative care health professionals are the experts. We are able to be comfortable in our last days and to die naturally. The palliative care team also works to help us find meaning as we face our death or that of a loved one.
Palliative care “opposes what makes death most terrifying and unwelcome — pain and loneliness.” (Pope Francis, November 16, 2020)
When our doctor tells us that there is no medicine or treatment that will cure us or a loved one and that we or they are going to die, we will need a lot of support. It will be a difficult time for us and for our family and friends. People in this situation report feeling different things at different times including sadness, confusion, fear, anger and peace and also that it helps to talk with someone you trust.
We know at an intellectual level that we will die. Yet it can be confronting when this becomes personal and we have to face it happening to us or our loved ones and learn to talk about it. It is likely that when we have to deal with it, we won’t even know where to start. This can be a good time to begin engaging with palliative care experts.
A happy death
I think that, in general, we want a “happy death” by which we mean that we don’t want ourselves or those we love to experience pain or to suffer and we want to be close to our loved ones and to God. We want to experience care, belonging and love until the end. We want dignity and some measure of control over how our life is lived and palliative care provides special support that helps make this a reality.
I invite you to be open to palliative care for your loved ones and for yourself and to engage with it soon after a threatening diagnosis. Also, I urge you all to do whatever you can to ensure that compassionate, life-affirming care is provided to everyone who needs it, so that no-one ever feels, or is, in pain or abandoned.
Positive stories of palliative care can be found at Palliative Care Australia (https://palliativecare.org.au/tag/patient-story/) and Catholic Health Australia (CHA) have a number of publications for further reading and deeper investigation for those who want it.
St Joseph is the patron of a happy death.
St Joseph, pray for us.