May 19 marks the start of National Palliative Care Week, which shines a light on the importance of palliative care in reducing unnecessary suffering and distress experienced by terminally ill patients and their families.
Palliative care refers to ‘person and family-centred care provided for a person with an active, progressive, advanced disease, who has little or no prospect of cure and who is expected to die’ (Palliative Care Australia Ltd 2019).
The primary goal of palliative care is to help people with a life-limited illness to have a high quality of life up until the end.
This year, National Palliative Care Week will focus on “What matters most?”, a theme that highlights the need for Australians to plan ahead for their end-of-life care, and to talk openly about it with their loved ones and health professionals.
However, why is it important to talk about what matters most?
We asked UTS Palliative Care academics about what the theme means, as well as their advice on how to start talking about what matters most.
Professor of Palliative Nursing, Director ImPACCT
At its core, palliative care is about enabling people to be as well as possible for as long as possible. It is about maximising quality of life and minimising discomfort. To do that, we work with them to understand what is important to them as they approach the end of their life, and to create opportunities to make this happen. Whether that be the desire to travel, either in Australia or further afield , or to just stay at home and to spend quality time with family and friends, it is the role of palliative care to help people to make these goals a reality while still balancing the demands of their illness.
If we all found out today that we only had 100 days to live, how would we actually want to use that time? What would be important and what would you let go? What activities would you undertake when you have so little energy? This is what it means to ask, What matters most?
Palliative care allows people to do amazing things in spite of their illness. I think about the young mum I cared for, with two daughters – she knew it was to be her last summer, the last school holidays they will have together. So, for her, the absolute priority was to ensure that these two little girls had the best summer possible. How do we make this possible for them to enjoy this time while still managing her illness?
Thus, it is the role of palliative care clinicians to help patients achieve their dreams, by organising their treatment, medical appointments, medications, transportation and so on. It is about working with people to fulfil what matters most and to develop a strategy with them that will manage their illness while still allowing them to live.
Palliative care is holistic. When trying to fulfil the desires of the patients, we need to consider all the aspects that need to be taken into account in order to make their desires possible.
Senior Lecturer, ImPACCT
Maintaining control is among the things that matter most to a majority of people at the end of life. Advance care planning is a process by which people clarify their values and preferences and communicate these to family members and health professionals to ensure they receive care consistent with their wishes in the event they become unable to speak for themselves at the end of life.
Advance care planning is about giving people who might be called upon to make decisions on your behalf an understanding of what quality of life means to you and what compromises you are – and are not – prepared to make in the event they have to decide whether to keep you alive through medical treatments.
To talk about what matters most, start these conversations early and revisit them over time, and involve both family and health professionals in your discussions. Some people find it easier to talk about end of life care preferences when these are hypothetical and far-distant compared to imminent.
At the same time, preferences often change as death becomes closer, so it’s important to review your advance care plan and update it as necessary. Make sure your plan is available to anyone who might be involved in making a decision on your behalf. Involving health professionals in these conversations will ensure you have a realistic understanding of what various treatments might offer in the way of benefits and drawbacks.
Advance care planning will not only help you receive the care you want, but will also reduce the burden on your loved ones by helping them feel more certain about decisions they are asked to make on your behalf.
Professor of Palliative Medicine, Chief Investigator Palliative Care Clinical Studies Collaborative (PaCCSC), ImPACCT
Most of us, if we have warning of our death, we will reprioritise what we are doing. What matters most when time is limited will often change from what matters most in our everyday life. It is also a highly individual part of our life.
Ensuring people have adequate warning of limited prognoses so they can rearrange aspects of their life is a crucial skill for every health professional. Having time ‘stolen’ late in life because health professionals did not outline a person’s prognosis means that patients are not able to use all of the available time to partake in what is important to them.
No one finds conversations easy at the end of life. For the person who is facing a life-limiting illness or for the people who are around him or her, it can be tough to initiate the conversation. However, such conversations are an opportunity for some extraordinary learning and personal growth at times. We hope that people can have competent, confident and compassionate conversations at this time in our lives.
A good topic guide would be to speak about the things which have always been in your conversations. Continue to talk about life: people with a life-limiting illness are still living, albeit in the shadow of that illness. They do not see themselves as ‘dying’ for much of the time between learning of their limited prognosis and their death.
Who of us would not want to have some conversations to finish unfinished business; a relationship or two to mend; or apologies to give? This is an opportunity for the conversations that we have either avoided or have never had, to connect at levels that rarely happen at other times in life.
Professor of Palliative Medicine, ImPACCT
What matters most? gives us guidance about how we should be talking about issues related to health and palliative diagnosis amongst ourselves and with our loved ones. It gives us the opportunity to communicate clearly to the people who know us the best and who might be speaking for us or supporting us if we were in this situation.
It also guides how we interact and behave in our professional practice. As a clinician, when I have these conversations, I always frame it about living. After all, what we do is help people live with the limitations of their situation.
Sometimes, we don’t know anything about the person in the bed. However, if you actually ask the right questions, then you can learn so much – at first glance, they’re just a patient with such-and-such illness but all of them are people with stories. It’s just a matter of giving people permission to tell you what that is, and to value it.
Often, patients need the space and opportunity to feel that someone thinks that what they are saying is important, that what they want is important. In that respect, it is not about giving people advice or solutions, it is about giving choice. It is the role of the palliative care practitioner to think of innovative ways to mobilise all available possibilities so that your patient is able to do what they want and live as best they can.
However, when you have a serious illness, you are put into a health care system that is geared to problem solve and to fix, meaning there isn’t space to let people just talk. In that regard, this year’s theme has a much deeper and much broader impact on palliative care service, delivery and quality of life for people with advanced illness. If we are to fulfil all aspects that drive palliative care service, delivery and experience, then we need health care policy that is nimble and is able to respond to the desires of patients.
Associate Professor (Research), ImPACCT
To ask What matters most? is to ask how we, as health care professionals, can provide patients with the best quality of life for the time that terminally ill patients have left.
Living best with whatever time you have left is also to appreciate that people are different. Health care is not a ‘one size fits all’ approach. As such, palliative care focuses on tailoring care and support to the needs and desires of the individual. We emphasise ‘person-centred care’, which means that the patient, and their family, are at the core of what we do.
After all, there are many different ways people would interpret the question what matters most. I have posed this to students before; many of them spoke of family and friends. However, for some with a life-limiting illness, what matters most might also extend to the treatment they are receiving, the state of their wellbeing and what their health professionals are like.
Often, people erroneously align end of life care with palliative care but we do more than that. Palliative care is about more than death. It is also about ensuring that patients are doing what they want and are surrounded by their loved ones as they progress in their condition.
A research paper I shared with my students focuses on what matters most to people. We compared the most common things patients say are important and the most common things families say are important – the top three results are the same. Their relationship with the health care provider, their relationships with family and friends and pain control were the main concerns. Often, training in medical professions focuses on pain relief; however, we need to also be aware that there are interpersonal issues that are important to patients. Talking about all aspects of what matters most should be prioritised.
However, these are not easy conversations. There are increasingly initiatives designed to encourage people to talk about death, even those who are in the health profession. There are many tools available to help people normalise death and grief as well.
If you are uncomfortable talking about your own wishes and desires, it can help to think about what you would want your close friend or family member cared for, about what you perceive as best care or best end of life situation. After all, sometimes focusing on someone else and thinking about what you would want for them can help you to come to terms with their situations.
For health care professionals and students, who are surrounded by issues of life and death every day, it can be difficult to talk about this topic. Reflecting on an experience or a conversation, debriefing with someone else, developing the practice of paying attention, acknowledging your feelings; these are all strategies that can all help professionals to deal with the pressures of their role.
For more information about National Palliative Care Week (19-25 May), please head to the Palliative Care Australia website.