Why do palliative care people bang on about advance care planning all the time?
Well, when you break it all down, advance care planning is all about respect. Respecting the values, goals and preferences of the person making the plan. And palliative care is really big on respecting people’s preferences and values, especially when it comes to their end-of-life care.
Unfortunately, when it comes to respecting people’s choices around their health care, the law has been lagging behind. Existing laws around advance care plans and medical decision making are often confusing for patients and families, as well as their treating clinicians. Fortunately, this is all about to change in Victoria. Continue reading →
Many of you who are regular Palliverse readers will be aware of our ongoing promotion regarding the need for the community as a whole to support open discussions about death, dying and end-of-life care. A group of researchers from the University of Alabama have recently published on a novel approach to this issue. In this study, they report on the effects of training lay community members as ‘health navigators’, who work with patients in hospital to help them understand the process of advance care planning, and to facilitate their further discussions with their family and healthcare team.
What is important to palliative care patients, beyond physical concerns?
Patient self-defined goals: Essentials of person-centered care for serious illness
In this project (part of a larger US study of an upstream community-based palliative care approach) lay health care workers provided monthly supportive visits for 160 patients with advanced heart failure, cancer or dementia, and expected to die within two to three years. As part of the project, the care guides explored what was most important to the patients and documented their self-defined goals.
Four key themes were identified from the responses – medical, non-medical, multiple and global and these were distributed as follows:
The authors concluded that it is feasible to elicit and record serious illness goals in this patient population. They noted that the diverse range of goals that were identified related to global aspirations and many facets of the whole person, which presents an opportunity to individualise assessments and care planning processes and assist decision-making that more fully reflects current health status and psychosocial and spiritual aspects of patients’ lives.
Sandra Ellen Schellinger, Eric Worden Anderson, Monica Schmitz Fraser and Cindy Lynn Cain, Patient Self-Defined Goals: Essentials of Person-Centered Care for Serious IIlness, American Journal of Hospice and Palliative Medicine, published online 23 March 2017, doi:10.1177/1049909117699600.
This blogpost is dedicated to a patient that I never thanked for the part she had to play in my palliative care education.
The sharing of patient stories can have a huge role to play in the education of healthcare practitioners and laypeople. Palliative Care health literacy remains relatively low despite palliative care services having been present in Australia and New Zealand for well over three decades. Relatively few healthcare practitioners let alone members of the general public understand the role that palliative care services can have in the improvement of quality of life. Are we sharing the right stories, in the right places, to the right people?
Our colleagues at CareSearch are developing and running a ‘Massive Open Online Course’ (MOOC) on death and dying (Dying2Learn) for the second year in a row.
The CareSearch MOOC will provide an opportunity for any Australian to openly and supportively discuss, learn, and contribute to discussions on social issues around death and dying. The MOOC has been created for the general public in Australia, but everyone is invited to join us.
Registrations open on 27th of March for a start on 3rd April. It will run for five weeks.
It will include learning modules covering:
How does today’s society engage with death and dying? How do we use language to describe it? What about the role of t.v. and film?
What does death ‘look’ like? How is death and dying portrayed in the media?
If death is the problem, is medicine the answer? A look at what we die of, the role of medicine, and prolonging life versus prolonging death.
More evidence for the benefits in quality of life experienced by those receiving early integrated palliative care – but how do we communicate this to those set to benefit?
This post continues on our theme for this month – palliative care and quality of life. Below, Michael mentioned the mounting compelling evidence we have to show the relationship between these two concepts. Just last week, another quality trial conducted by Temel and colleagues was published in the Journal of Clinical Oncology, again showing improvements in quality of life for patients with incurable lung or non-colorectal GI cancers who received early integrated palliative care alongside their usual oncology care.
So with even more good news (and quality evidence!) about the benefits of palliative care, I find myself reflecting why integrating palliative care in practice remains such an ongoing challenge.
Some of my PhD work has been exploring communication about palliative care and initial perceptions and understandings of palliative care held by patients with advanced cancer and their family carers. Conducting these interviews and having these conversations revealed just how far we have to go to bring patient, carer, and public perceptions in line with the evidence we have for palliative care as quality care.
While our recent focus has perhaps necessarily been on demonstrating effectiveness, now we also need equal focus on how best to communicate the message that palliative care is quality care. Some of my research would suggest our language for talking about palliative care is not always sophisticated – at times overly complex, at times perhaps deliberately ambiguous – and ultimately leaving those who may be otherwise set to benefit from engaging with palliative care early unclear.
This idea is not new – others in the field are, and have been, talking about the need to get our messaging right for some years now. But what should the message be? Whatever approach we take, we need equally compelling evidence that it resonates with those who most require our care.
We have been talking about quality care at Palliverse this month a topic that has a lot of relevance to early palliative care. The WHO talks about early palliative care as meaning care that is offered at the time of a life-limiting diagnosis. In practice palliative care is often offered much later, and some have suggested that this means that real benefits are missed for many people.
Difficulties accessing medications which carers need to look after someone dying at home can mean that the person needs to be sent in by ambulance to hospital to die. Having been on the hospital end of this transaction many times, I know how sad it is for the patient and family when something as simple as access to medicines gets in the way of care at home.
A study carried out by Paul Tait and a team from South Australia has shown that the proportion of community pharmacies stocking a list of medications needed for end of life care at home has nearly tripled from 2012 to 2015.
Significantly more SA community pharmacies carried all five core medicines following the delivery of a range of multidisciplinary education strategies.
This indicates that the likelihood of South Australians being able to access items from the List through community pharmacies in 2015 has significantly improved.
They concluded that “These results suggest that there is value in developing and promoting a standardised list of medicines, ensuring that community palliative patients have timely access to medicines in the terminal phase.”
Tait P, et al. BMJ Supportive & Palliative Care 2017;0:1–8. doi:10.1136/bmjspcare-2016-001191