Palliative Care Guide

What is palliative care?

Palliative care is person and family-centered care provided for a person with an active, progressive, advanced disease, who has little or no prospect of cure. It is specifically designed around the person expected to die and for whom the primary goal is to optimise the quality of life.

Palliative care helps people live their life as fully and as comfortably as possible when living with a life-limiting or terminal illness. A palliative approach to care may be delivered by doctors, nurses, allied health professionals, volunteers and carers. Depending on what services are available where you live, you can have palliative care at home, in a community setting such as a residential aged care home, in a hospital or a specialist palliative care unit. At Estia Health we offer palliative care in all of our homes.

Palliative care identifies and treats symptoms which may be physical, emotional, spiritual or social. Because palliative care is based on individual needs, the services offered will differ but may include:

• Relief of pain and other symptoms e.g. vomiting, shortness of breath
• Equipment needed to aid care at home
• Assistance for families to come together to talk about sensitive issues
• Planning for future medical treatment decisions and goals of care
• Links to other services such as home help and financial support
• Support for people to meet cultural obligations
• Support for emotional, social and spiritual concerns
• Counselling and grief support
• Referrals to respite care services

Palliative care is a family-centered model of care, meaning that family and carers can receive practical and emotional support.

Early referral to palliative care can often prolong life and certainly supports a better quality of life.

How is palliative care different to end of life care?

End-of-life care is a specific phase of the palliative care journey. Generally, end-of-life-care is the last few weeks of life in which a person is rapidly approaching death. The needs of the person and their carers are higher at this time. This phase of palliative care is recognised as one in which increased services and support are essential to ensure quality, coordinated care. This considers the terminal phase or when the resident is recognised as imminently dying, death and then extends to bereavement care for loved ones.

What are the principles of palliative care?

According to the National Palliative Care Strategy there are six fundamental principles to palliative care. These are expected to be demonstrated in all service delivery, quality improvement, policy and research activities.

They are:

• Palliative care is person centered care. People affected by life-limiting illnesses will be represented in the planning and delivery of services at every level. Palliative care is holistic care and will include attention to physical, emotional, psychological, social and spiritual needs. It will be provided in a manner that is sensitive and culturally appropriate to the preferences and needs of the person, their family and carers.
• Death is recognised as a part of life. Acknowledging the reality of dying and death can help people to prepare for the end of life in ways that are meaningful to them and their families and carers. This will look different for different people. Early and documented planning with formal care providers and carers can ensure that people facing an expected death are supported physically, emotionally, culturally, and spiritually, including bereavement support for families and carers.
• Carers are valued and receive the support and information they need. Carers provide an essential component of palliative care and in many cases provide the majority of care for a person whose life is limited by illness. Uniquely, carers can be both providers and recipients of care and, historically, carers’ needs have often not been considered in care planning. Their role will be acknowledged and respected and their health and wellbeing needs considered as a component of holistic palliative care, including bereavement support.
• Care is accessible. Palliative care needs to be flexible and responsive to ensure that care is accessible respectful, culturally safe and appropriate according to need. Specialist palliative care services play an important role in meeting complex needs and supporting others to provide this care.
• Everyone has a role to play in palliative care. While not everyone will need specialist palliative care, specialist palliative care providers have an important role to play across the health system in building the capacity of those providing palliative care, including people within the community, to ensure that people affected by life-limiting illnesses get the care they need.
• Care is high quality and evidence based. People affected by life-limiting illnesses will also have access to trustworthy resources to help them make informed decisions about their care

What is the difference between palliative care and hospice care?

Unlike palliative care, hospice care is short term, it begins only after a medical assessment indicates you have six months or few left to live. Palliative care however, can and should begin at any stage of a life-limiting illness.

What are the 3 main goals of palliative care?

The main goals of palliative care ideally begin soon after the diagnosis of a life limiting illness. They involve:

• Listening and enquiring
  Determine the person’s level of understanding and reactions to their situation and prognosis. Asking open questions can be helpful to understand personal goals and preferences:
  • What is your understanding of where you are with your health
  • What are your worries for the future
  • What are your hopes and priorities
  • What are you willing to sacrifice, and what are you NOT willing to sacrifice?

• Checking and clarifying
  Goals are likely to change as the person’s illness progresses. It is important to state your understanding of their goals and compare this with how they see their situation:
  • What I am hearing is that you feel … and would prefer … Is that what you meant
  • Thanks for clarifying that. Is there anything you think I have missed?

• Documentation
  A palliative care plan involves documenting and sharing an agreed plan of care for a person with a life-limiting illness. It is not a specific tool although many organisations have specific care plan templates which are used for this purpose. A clearly documented palliative care plan:
  • Ensures the relevance, continuity and success of a coordinated multidisciplinary approach to care across all care settings
  • Articulates how the team will work together to provide the best care
  • Helps the team to anticipate and accommodate evolving needs and preferences of the person with a life-limiting illness.

This documentation should be shared with the person, their family and all relevant healthcare professionals.