Palliative care is not just about dying. It's about living well. | Chris O'Brien Lifehouse
 In Lifehouse News

National Palliative Care Week 2017 begins on the 21st of May. Dr Judith Lacey is the Head of Supportive Care and Integrative Oncology at Chris O’Brien Lifehouse. Here, she discusses the importance of palliative care in cancer, both at the time of diagnosis in hospital and, later in the care cycle, at home.

Palliative care is not just about dying. Cancer treatment is changing so dramatically we’re now seeing people with incurable cancer living for longer. We’re always introducing new therapies in the hope of turning cancer into a chronic illness, so we need palliative care. We are working to shift the paradigm and maintain people’s wellbeing independent of their prognosis.

Palliative care is about living. Multi-disciplinary palliative care means a whole team of social workers, pastoral care workers, physiotherapists, occupational therapists, trained nurses and doctors who are able to provide different components of care.

My interest is taking the principles of palliative care and moving them into full cancer care from the time of diagnosis. Many of us working in integrative oncology and in survivorship are palliative care-trained doctors who use holistic consultation skills. We look at the whole person rather than just their illness. Palliative care-trained doctors are the ones who understand a patient’s cancer, look at how they’re coping with it, what their symptoms are, what their quality of life is, what impacts on that and then putting it together and saying: ‘let’s work out strategies to keep you living well’.

The most important point is that patients have somebody they can talk to about their symptoms and things that impact them day to day.

I prefer seeing people from the time of diagnosis. I see people if they have a chance of developing complex issues – for example, if somebody has a cancer that presents with pain or the chance of chemotherapy working isn’t high.

I would emphasise again that being referred to palliative care doesn’t necessarily mean that you are dying. It often means that people are being proactive to improve the quality your life and being referred to palliative care would often prolong life.

In fact, there is a landmark 2010 study by Jennifer Temel MD, an Associate Professor of Medicine at Harvard Medical School, published in the New England Journal of Medicine that showed life was prolonged for lung cancer patients when referred to palliative care because it keeps people living better.

In two weeks, oncologists from all over the world will be meeting at ASCO, he big American Society of Clinical Oncology conference. ASCO has recommended that by 2020 palliative and supportive care should be integrated into mainstream cancer care for all patients and that early referral improves the quality of living for people living with incurable cancer.

I use many of our team of supportive care specialists here at Chris O’Brien Lifehouse cancer hospital to keep our patients well and, when and if the patient’s disease progresses and they need more care at home at a higher level, I then refer them to a palliative care team closer to where they live. There are many really good palliative care units around NSW, so we try to send people closer to home for end of life care so that they are with their family.

A big part of palliative care is caring for the carer, and there’s a lot of research looking at the importance of palliative care being not just for the patient but being just as much their family. They are grieving for somebody – how we can care for them and their emotional wellbeing with counselling is important. It’s important that the carer feels that they can comfortably ask questions that may appear to be silly and that they are very much involved in as much or as little as they want too for that person. Here at Lifehouse, we provide massages and reflexology and different treatments for the carer. The social work team will spend a lot of their time working to support the carers and their families. We also have the psychoncology team who spend a lot of time with the family members.

A case study (this is taken from an amalgam of patients and does not refer to a single patient)

A married, 40-year-old man with three children at home aged under 15 years, is diagnosed with stage four metastatic lung cancer. He has disease in his bones at the time of diagnosis and is in pain and a bit short of breath when moving around. He is offered chemotherapy, but there is question over whether the chemotherapy was going to work with his type of cancer so he is referred to me early.

As a palliative care specialist, I work with the nurses at Chris O’Brien Lifehouse to fine-tune his care.

For the first few months my role is just checking in and being proactive, making sure that his pain is well controlled and we adjust his medication so he can continue to work. There is an exercise program because exercise in lung cancer is shown to improve quality of life. We have to ensure he is exercising correctly, mindful that he has bone disease.

We check in to see how his kids are going and that his wife is well supported.

Because his disease is progressing despite the chemotherapy, we ensure changes are picked up early and acted on so that he is never in a lot of pain.

His medication is constantly updated to reflect these changes. When his disease causes some problems with his spinal cord and some weakness in his legs we pick it up quickly and organise with the oncologists to arrange radiotherapy and adjust his pain medication.

We then link him into the community palliative care team because it is evident that he can no longer work and he needs extra support at home and closer 24-hour monitoring. We bring in psychosocial support, including social workers and counselling for his family and for him, adjust his medication and closely monitor his bowels and his breathing and his pain.

At the time he is no longer able to come in and out of hospital, the community palliative care doctor takes a more prominent role and sees him at home.

Dr Judith Lacey is the Head of Supportive Care and Integrative Oncology at Chris O’Brien Lifehouse. Her primary interest is in the development and integration of supportive care interventions to keep people living well with cancer. Her area of interest is in whole person care: integrating care for people and their families living with cancer or chronic illness that affects their physical and emotional wellbeing.

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