It’s Palliative Care Week: What do you know about it?
24 May 2021
St John of God South East Melbourne Hospitals Cancer Care Coordinator Jo Wilson prefers not to use the word terminal for patients in palliative care unless they are imminently dying.
Instead, she believes that although palliative care is for people who have an incurable illness, practitioners such as herself are there to support patients and their families in all aspects of living with an illness.
“A life-limiting prognosis doesn’t always mean death is near,” she said.
“Even incurable conditions can be managed long-term.”
Relief of symptoms is one of the main aims of palliative care. It manages the physical, emotional, spiritual and social impacts of an illness without actually trying to cure it. Treatment is always tailored to an individual’s needs and provides much needed support to families and carers. As St John of God Health Care palliative care nurse Robin Cooksey described it, “palliative care is simply about your choices, your decisions, your voice.”
It is the work of palliative care practitioners to give people the chance to live as well as possible, for as long as possible, with their support extending far beyond just providing care at the end of a person’s life. Educating the community on the nature of palliative care, is an important part of National Palliative Care Week which is held from Sunday 23 May to Saturday 29 May - this year seeking to raise awareness of its many benefits under the theme of: ‘Palliative Care-it’s more than you think’.
The other aspect of National Palliative Care Week is to recognise the ongoing commitment and dedication of all of those who selflessly and tirelessly work and volunteer in palliative care roles across Australia. For St John of God Health Care, we not only attend to the medical needs of patients with incurable illnesses, we have a dedicated palliative care unit, that works alongside our pastoral care practitioners to identify and treat a person’s symptoms whether they be physical, emotional, spiritual or social.
St John of God Berwick Hospital Nurse Unit Manager Mandy Fidanza, who's unit provides palliative care, said it's a privilege to connect and care for someone and their family.
“Being involved in each patient’s unique story - even if their life ends with us - we forever become a part of their ongoing story and that of their family’s," Mandy said.
"Patients can often come to us at their most vulnerable time and yet they let us into their lives. It’s our job to guide them, assist in their decision-making and help them achieve their goals and wishes, taking into account their cultural and religious needs, disability and age – it all influences and shapes the care you give them.
"Most importantly, ensuring that when they are at the end of their journey, they are where they want to be-either at home or in hospital, surrounded by the people they want to be with.”
While Mandy admitted the job of a palliative care worker can be difficult at times, it doesn’t detract from the hugely rewarding experiences they gain along the way.
“We learn to be patient, calm, non-judgemental and understanding. We have broad shoulders and yet we cry. We’re human. We get attached. We share experiences with our patients and their families … and sometimes things really touch a chord,” Mandy said.
But other times, palliative care workers share in the joy that the perplexity of life can bring – often having the opportunity to be truly impactful in the last moments of a person’s life.
Mandy reflected on one such experience where a patient she was caring for received a very limited prognosis with only days left to live. It was, however, his greatest wish to get home with enough time to teach his grandson how to change the oil in his car. Although it was a Friday and a discharge process can take days to coordinate, Mandy and her team, with the help of community palliative care, were able to ensure the stars aligned enough to allow her patient to be discharged the following morning with adequate pain management in place.
A few weeks later Mandy would learn that her patient fulfilled many of his final wishes, most importantly, teaching his grandson to change the oil. And after spending the limited time he had left with his family over that weekend, he passed away peacefully on the Monday morning - his family forever grateful for the time they got to share with him.
While the care of patients is at the forefront of a palliative care worker’s role, the care of their family members becomes ever more central to the holistic care of the dying person also.
As Mandy explained, when a patient feels comfortable and their needs are being met, families can feel more at ease with their loved one’s passing.
"We only have one chance to get it right and if we miss opportunities it can lead to complicated grief for families left behind,” Mandy said.
“That’s why it’s the little things that matter. Sitting with a patient for a period of time. Talking about who they are, what hopes they have for their family, what their fears are - ensuring that we know where they want to be and who they want to be with at the end of their journey is paramount.
"It’s very important to us, that a patient knows they have control over what happens to them and that they have been granted their wishes at every possible opportunity.”
At St John of God Health Care, we are tremendously proud of the work our palliative care workers do. The positive impact and the contribution they make to a patient and their family’s lives is invaluable and something we couldn’t be more proud of. We thank them for their unwavering dedication to their jobs and the difference they make to our hospital community and the lives they touch each and every day.
The idea of committing yourself, voluntarily, to a job that revolves around caring for people with a life-limiting disease is daunting to most of us and often really hard to understand. So instead of trying to explain it in the body of this story, we invite you to read the thoughts of St John of God Health Care pastoral care practitioner Cathy Rose, who actively sought out the opportunity to work with palliative care patients and their families.
What do you enjoy about your job?
I am very privileged to be working as a pastoral practitioner at SJGHC: this really is my dream job. I started my career as an oncology/palliative care nurse. I realised then that I really enjoyed working with patients and families at a deep, personal level, and that I was really good at listening. It was often frustrating that, as a nurse, I often did not have the time to spend just sitting and listening to people when they really needed me to.
Fortunately, while studying theology as an interest, I was introduced to CPE (Clinical Pastoral Education) - practical training in pastoral care, which eventually brought me to SJGHC South East Melbourne Hospitals. Since then, I have also completed a graduate certificate in bereavement counselling, and as such, I have come to the understanding that a large component of pastoral care is about loss – whether it be death, loss of independence, loss of health, ect.
Working with palliative patients must be difficult, how do you overcome this aspect of your job?
I know we say it so often that it can become a cliché, but self-care is vitally important. It is mandatory that as a pastoral practitioner that I have professional supervision at least six times a year. Fortunately, the hospital supports this practice. I also know that my boundaries are important, and I have cultivated a practice of leaving my professional worries at work. I think wearing a uniform helps this – when I change at home, I physically take off work concerns with my clothing.
Debriefing among my work colleagues is vitally important also – not just with my pastoral care workmates, but with the nurses and doctors I work with. I have also found my managers to be approachable and helpful. I try to follow GEM principals at home - Gratitude, Empathy and Mindfulness – however, some days I manage this better than others. Walking the dogs in beautiful scenery, reading a good book, having a massage every two months are some of the ways I care for myself. My faith is also a guiding light for me. It is helpful to know that EAP is always there to support
An intrinsic part of being in pastoral care is working with people at the end of their lives as well as supporting their families - what compelled you to actively seek out a career in this area despite this being a major component to your job?
It is because you engage and assist people and their families, at such a vulnerable time. Of course it is incredibly sad, and sometimes you cannot do anything to physically help, but often just by being with them, being totally present with someone makes all the difference. Even though we avoid thinking about it, we are all going to die someday, and assisting people to ‘die well’ is addressing a basic human need. When people die at peace, or you and the team are able to contribute to the alleviation of some degree of emotional or spiritual distress, it is absolutely rewarding. I also find the people who work in this field to be kind, compassionate, and fun loving people. Ideal workmates to have.
What do you like most/least about your job?
I think I have articulated what I absolutely love about my job. What I dislike about my job is a more difficult question. I think it is the assumption that pastoral care is all about religion, and I have a secret agenda. Pastoral care is emotional and spiritual care, and the aim is to discern what is meaningful and important to the patient and families. Religion only becomes a focus if the person I am with wants to discuss it. Sometimes religion can provide hope, sometimes however, it may make people fearful – people need to feel free to discuss anything. We are all imbued with some kind of spirituality, not necessarily religious – it is what makes our lives mean something.
What is something you have learned from working with palliative care patients?
I am always learning from my patients – no two of us are alike. I like to be curious, and interested in the people I see. I suppose that I have learned that, however strange it might sound, death is not the worst thing that can happen to us. I have shared joy, laughter and serenity with people, and their significant others, at the end stages of their lives. The most important thing is to live a good life, and that a good death is often just the summation of this life well lived.
Has there been an experience you’ve had as a caregiver in palliative care that stands out more than most?
There are always patients who you vividly remember, with whom you developed a close relationship with, with whom you explore both the light and dark places with. Most recently, I visited a patient the day before she died who we had cared for in the Oncology Unit for over five years. I had traversed all fields of emotion with this beautiful woman – from celebration to utter devastation. I was so fortunate to have been able to hear all she had to say – no topics were taboo. She was not ready for death, but I believe I was able to provide some comfort. I was able to hold her hand and hear her say thank you and goodbye. A sacred moment. Needless to say, I needed to practice self-care after this, as did the other caregivers on the unit who knew her well. I have used the word before, but it was indeed, a privilege.
Another major misconception in dealing with patients with incurable diseases is that palliative care units/caregivers are about dying when in fact they are more about living, and more importantly, living well – can you share your thoughts on this?
There is a well know Snoopy cartoon where Charlie Brown says reflectively “You know Snoopy, one day we are all going to die”, to which Snoopy relies, “Yes, but on all of the other days we will live”. I agree that palliative care is about living each day as well as we can, and this can lead to a smooth transition to death. However, as I articulated previously, talking about death is often a taboo. It is important to realise that we are all mortal, and there is a time to think about how we would like to die.
This becomes more important as people age, or are faced with a life-limiting illness. Making plans for the provision of palliative care, writing wills, writing advanced care plans and thinking about funerals are often left until it is too late. At a certain age, even when we think we are healthy, it is important to have some plans for our death. Not to dwell on it, but at least briefly consider it. I am personally facing my 60th birthday (yikes), and my husband and children know where my will is, and have some idea what I would like in terms of a funeral. If we could normalise the need for these plans, it would make discussions about end of life decisions much simpler.
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