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People with cancer not making advance care plans with their GP
A new survey suggests less than 3% discuss end-of-life care with their doctor.
The low rate is despite the fact most people with cancer and those in their support network want to discuss end-of-life care, according to the research conducted by Advance Care Planning Australia (ACPA).
Overall, 65% of people with cancer and support people report having advance care planning (ACP) conversations, but these largely occurred with friends and family; only 4% reported having discussed the topic with their doctor, which drops to 2.7% when restricted to cancer patients alone.
Dr Sonia Fullerton, co-author of the study and a palliative care consultant at the Peter MacCallum Cancer Centre, hopes the findings will bring greater attention to the importance of ACP in cancer care.
‘People with cancer and their families want to have these discussions, but too frequently their doctors and healthcare providers feel unprepared for such weighty and potentially difficult conversations,’ she said.
‘We need to do more to ensure that everyone involved in the care of people with cancer can confidently and sensitively lead these important conversations.’
The Australia-wide study included more than 700 people with cancer and their support people from a range of ages, demographics and health conditions.
Other key findings include:
- carers and support people tend to want discuss ACP earlier than the person with cancer
- only 16% of people with cancer want to discuss ACP at the point of cancer diagnosis
- 42% of people with cancer want it discussed it when their cancer is no longer curable
- 32% of people with cancer want to discuss it only when they raise the matter
- 3.9% of people with cancer did not want to discuss it at all.
Up to half of patients with advanced cancer will
experience delirium when admitted to hospital and 90% will experience delirium in the days before death, leaving them unable to make treatment decisions.
However, ACP helps people to clarify values and preferences, which can then assist doctors to align treatment with the preferences of the individual.
Associate Professor Joel Rhee, Chair of the RACGP Specific Interests Cancer and Palliative Care network,
previously told newsGP the long-term relationships GPs often have with patients means they are well placed to help people begin ACP discussions
.
But he also said patients and GPs can both encounter a number of barriers, in particular initiating the conversation.
‘It’s one of those things where the patients often expect the health professionals will raise it, while the doctors prefer the patients to raise it first,’ Associate Professor Rhee said.
‘Because of the legality associated with [ACP], if doctors are not completely sure or confident it’s unlikely they’re going to raise the issue themselves.
‘Another thing is, sometimes [GPs] might feel if they start the discussion it’s going to take a long time and they don’t have time to talk about it for 15–20 minutes.’
Associate Professor Rhee has
conducted research that shows practice nurses can play a more active role in the process.
‘We weren’t 100% sure how the patients would react to having these conversations with the practice nurses, but they really found it useful and enjoyed talking with them,’ he said.
‘The patients mostly weren’t concerned about whether [they spoke with] a doctor or a nurse – it’s more the relationship. They felt they could talk to the nurse and the nurse knew them well and could communicate well, and that was really important to the practice patients.’
Another difference between ACP in general practice and palliative care settings, according to Associate Professor Rhee’s research, is that the patient generally prefers to speak alone, rather than with the support of family or friends.
‘In general practice what seems to happen is, a fairly well patient has the conversation with their nurse and GP, and after everything’s finished they go back and have a secondary conversation with their family,’ he said.
‘That’s really important to know, because what we need to now do is give support for these patients because some of them felt they weren’t necessarily ready to have this conversation with their family.
‘We need to take this into account and maybe give some training or support for our patients to do that.’
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