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A NEW framework for palliative care has been suggested, which highlights the way it can be integrated into the treatment of serious illness earlier, respond to various diagnoses, and “facilitate a response to patient and family needs throughout the care process”.
Writing in the MJA, Professor Peter Hudson, Director of the Centre for Palliative Care, the University of Melbourne and Vrije Universiteit Brussel, and colleagues, said that “palliative care is too often considered, in the minds of both health care providers and the public, as exclusively about death and dying, and associated with a loss of control or abandoning of hope”.
“Palliative care has changed its focus from institutionally delivered hospice care for oncology patients to a broader purview encompassing care of patients suffering any serious illness from point of diagnosis and delivered at any site including home, hospice, residential aged care or hospital,” they wrote.
“There is also an increasing and proactive approach to early integration for improving quality of life.
“This follows a robust body of evidence demonstrating the benefits of early access to palliative care for patients, their family caregivers and the health care budget.”
The framework suggested by Hudson and colleagues consists of an operational definition of the discipline as:
“Comprehensive support for people diagnosed with a serious health condition. This support focuses on what is important to the person and their quality of life, not only their physical concerns but also emotional, social and spiritual needs. Care is delivered by the person’s main health care providers in partnership, as required, with palliative care specialists. Support is available at any stage of a serious illness including in conjunction with curative treatment, and in any setting. Support is also extended to the person’s family caregiver(s) ensuring they access the help they need to support their loved one while also maintaining their own wellbeing.”
Additionally, they suggest three points of access to palliative care:
- “Early palliative care (“Death is possible”). The main intent is typically curative or life-prolonging (disease-modifying) treatment, but palliative care staff may be involved for symptom management and explaining future palliative care involvement, should this be required.
- “Mid-stage palliative care (“Death is probable”). Clinicians would not be surprised if the person died in the foreseeable future (ie, months ahead). The main focus is therefore a palliative approach, although a number of people will be receiving disease-modifying treatments.
- “Late-stage palliative care (“Death is imminent”). The person will likely die soon (ie, within days or weeks). The focus is therefore entirely end-of-life care.”
Hudson and colleagues included four key messages for patients in their framework:
- “Palliative care is centred around you. The health care system can be complex and confusing; palliative care fits into your needs, your beliefs, your wishes, and your aims for your life. Then, you get to choose your way forward, informed by people who genuinely care.
- “Palliative care enables you to be prepared. Regardless of your disease stage or prognosis, palliative care helps you explore your expectations for the future and promotes prospects of peace and dignity.
- “Everyone deserves palliative care. Palliative care is ‘enhanced care’ that focuses on you and your family. It is sometimes misunderstood but will one day be available to everyone automatically as the gold standard of best practice care.
- “Palliative care is creative. Being based on your needs and those of your family, palliative care is flexible and responsive. In this way, palliative care can assist a sense of achievement and hopefulness by helping you realise and achieve your goals.”
Hudson and colleagues suggested the adoption of their framework, could “restore choice regarding options for care in serious illness”.
“When coupled with investment in public education, training, research and integration of palliative care principles earlier in an illness, the reframing of palliative care could bring us much closer to the goal of standardised high quality care for all people facing serious illness, and their families.”
Also online at the MJA
Research: Barbiturate-related hospitalisations, drug treatment episodes, and deaths in Australia, 2000‒2018
Darke et al; doi: 10.5694/mja2.51306 … FREE ACCESS permanently.
Podcast: Professor Shane Darke, from the National Drug and Alcohol Research Centre at UNSW Sydney … FREE ACCESS permanently.
Perspective: Mitochondrial donation: is Australia ready?
Sue et al; doi: 10.5694/mja2.51309 … FREE ACCESS for one week.
As a clinician, I support this new framework for earlier integration of palliative care services whenever there is a diagnosis that is complex or potentially life-limiting. Palliative services are significant in helping patients to understand the implications and potential trajectory of their illness, and earlier involvement would promote earlier, thoughtful conversations around hopes, values, and a personalized definition of living well. Defining the three access points helps to delineate palliative care from hospice, allowing for that “extra layer of support” that facilitates communication and empowers patients to actively participate in decisions relating to their care.
I don’t find an aspirational framework for palliative care useful when my lived experience is of having to request specialist palliative care consultation for an aged care resident with metastatic cancer, multiple pathological fractures and unmet needs at the end of life.