#44 Palliative care in Victoria: Why your participation matters

19 December 2019

A substantial body of international evidence shows that palliative care improves the quality of life of people with a life-limiting illness and their families and in some cases prolongs life. Palliative care also results in more effective use of health resources than usual care alone. These benefits are enhanced when palliative care is available earlier in the illness trajectory, not only when someone is about to die. Around three-quarters of decedents would benefit from palliative care.

The holistic person-centred and inter-disciplinary approach of palliative care provides a relevant model for all healthcare. It also plays a crucial role in facilitating high functioning health services in the context of an ageing population and the increasing role of chronic illness in mortality.

Unfortunately, substantial numbers of Victorians who die each year miss out on needed palliative care (see box).

Everybody’s responsibility

International, national and Victorian policy frameworks indicate that palliative care is everybody’s responsibility and must be integrated into all healthcare services. Sufficient specialist palliative care services are required to address complex needs and to provide consultancy, mentoring and education to other healthcare practitioners.

Actions to improve access to palliative care

Victoria’s 2016 policy framework identified goals and priorities to improve access to palliative care and end of life care choices. 

Achievement of these goals requires adequately resourced strategies to:

• Increase community awareness and understanding of palliative care; only 46% of Victorians have a good understanding of palliative care and even fewer among diverse communities.
• Develop generalist palliative care capacity among healthcare practitioners, especially in primary, aged care and inpatient services, where poor access is highest. Improve support for carers and facilitate more home-based care in line with community preferences.
• Strengthen workforce and service planning and development, including for specialist palliative care.
• Substantially increase investment in palliative care provision to address unmet and growing need.

End of life care choices

The introduction of Voluntary Assisted Dying (VAD) creates real urgency for universal access to palliative care by all Victorians who need it. Without this reality, the voluntariness of VAD is undermined, as is Victoria’s goal of optimal end of life care for all Victorians and their families.

Who is palliative care for?

It can be challenging for doctors to introduce the subject of palliative care, especially if this is only understood as imminent death. Palliative care is often only considered for malignant conditions. However, it is relevant for other life-limiting illnesses, such as cardiac failure, respiratory failure, renal failure and progressive neurological deterioration. Palliative care can be relevant for patients of all ages, including children. Palliative care does not always mean referral to specialist palliative care services; many general practitioners and other specialists have the skills to provide a palliative approach to care. 

Introducing palliative care earlier

Doctors and other health professionals have an important role in normalising the discussion about palliative care earlier in the illness. We need to help patients and families better understand how palliative care can assist with managing symptoms and optimising the patient’s quality of life. This includes careful titration of opioids. Palliative care can be provided in tandem with disease modifying treatment and treatment of comorbidities. Introducing palliative care does not mean giving up on life-prolonging treatment or giving up on life; it is about getting the most out of the life that remains. 

Ultimately though, as death approaches, all care is then focused on supporting the patient to die as well as possible. Diagnosing dying is really important as it allows the focus to be fully on maximising comfort and eliminating non-beneficial interventions such as routine observations, blood tests, imaging and non-essential medications. It prompts a discussion with family about dying and death and what would be important to the patient at this significant time. Communication needs to be clear and unambiguous; use the word ‘dying’.

Palliative care also supports the family and friends in their grief – both before and after the death. 

Communication

Before speaking, it is wise and helpful to listen. Explore the patient’s experience of illness and the impact it has on their life. Connect with the emotions. The following questions can be helpful:

• Ask about their illness trajectory. For example: What were you able to do 12 months ago, six months ago, six weeks ago, one week ago?
• How are you coping with the illness?
• What are the things that matter most to you? 
• What is the worst part about this illness?
• What do you worry about most (now and when you look ahead)?
• What do you hope for?
• Who do you talk with about your illness and how you are feeling?

Asking questions and listening makes it easier to know what to say and how you might help. Sometimes patients ask questions for which there is no answer. Acknowledgment that you don’t know and showing genuine care will help support the patient.

As well as the support you provide to the patient and family, you might also consider whether referral to specialist palliative care is needed and offer advance care planning.

Referral to specialist palliative care

Consider referral to specialist palliative care for:

• difficult to manage symptoms
• assistance with decision-making about end of life care
• complex psycho-social situations
• dying.

Most larger hospitals will have a Palliative Care Consult service that can provide advice. For patients living at home, or in a residential aged care facility, the local community palliative care service can be identified by entering the patient’s postcode on the palliative care service search at pallcarevic.asn.au/. Discuss the situation with the community service and how they might be able to help the patient and their family.

Advance care planning

Advance care planning is a way for a person with medical decision-making capacity to plan ahead for a time when they might lose capacity to make their own medical treatment decisions. In Victoria, this may involve one or more of the following:

1. Appointing a Medical Treatment Decision Maker
2. Completing an Advance Care Directive
   1. A values directive describing preferences and values that the person would want their Medical Treatment Decision Maker to take into account when making treatment decisions for them
   2. An instructional directive, in which the person gives consent and/or refusal to particular treatments in advance
3. Speaking with their Medical Treatment Decision Maker about their preferences and values and how they would want decisions to be made for them.

Further information about Advance Care Directives and appointing a Medical Treatment Decision Maker is available on the Victorian Department of Health and Human Services website - health.vic.gov.au/hospitals-and-health-services/patient-care/end-of-life-care/advance-care-planning/acp-forms

Discussions about advance care planning can help the patient to better understand the limitations of medical treatment and to consider what they would prioritise with respect to quality versus quantity of life.

Dr Barbara Hayes

Chair

Palliative Care Victoria Inc.

Odette Waanders 

CEO

Palliative Care Victoria Inc.

This article appears in the December 2018 edition of Vicdoc.