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Palliative Care

Aims, scope of practice, social work standards, conversations about end of life, spirituality, discrimination against LGBTIQA+ community, possible practice approach

This page has three sections:

  1. Background Material that provides the context for the topic

  2. A suggested Practice Approach

  3. A list of Supporting Material / References

Feedback welcome!

Background Information

Compiled from

Aims of Palliative Care

Palliative care is applicable once a terminal illness diagnosis occurs. It can occur early in the course of an illness or anywhere along the illness trajectory.

The focus of palliative care is to

  • provide relief from pain and other distressing symptoms.

  • affirm life and regard dying as a normal process.

  • intend neither to hasten nor to postpone death.

  • integrate the psychological and spiritual aspects of patient care.

  • offer a support system to help patients live as actively as possible until death.

  • offer a support system to help the family cope during the patient’s illness and in their own bereavement.

  • use a team approach to address the needs of patients and their families, including bereavement counselling, if indicated.

  • enhance quality of life and may also positively influence the course of illness; and

Guiding Principles for Safe and High-Quality End-of-Life Care (ACSQHC, 2023)

  1. Be person-centred and include family and carers      People have the right to direct their own care, whenever possible. Families and carers should be involved, in accordance with the person’s expressed wishes and/or legislation.

  2. Align with values, needs and wishes                 End‐of‐life care should consider a person’s expressed wishes regarding the circumstances, environment and place in which they wish to die. Their needs, goals and wishes for end‐of‐life care may change over time.

  3. Provide people with information they can understand            People should be provided with health information that they can understand and be supported to make decisions at the end of their life. If a person lacks capacity to participate in decision‐making about their care, a substitute decision‐maker should make decisions according to their best interpretation of the preferences of the person, but only after options for supported decision‐making have been exhausted.

  4. Consider cultural, spiritual and psychosocial needs                   Meeting the cultural, spiritual and psychosocial needs of people and their families and carers is as important as meeting their physical needs. This may include considerations such as beliefs and practices around the end of a person’s life and dying, and the time it may take to shape practices and processes accordingly.

  5. Include qualified, skilled and experienced multidisciplinary care     Effective communication, collaborationand teamwork that ensures continuity and coordination between teams, within and between settings, during transitions, and across multiple episodes of care is required.

  6. Ensure the right to refuse medical treatment               Decisions regarding treatment may be made in advance and remain valid unless the person or substitute decision-maker, family or carers state otherwise.

  7. Not be burdensome or harmful          It is unethical to provide burdensome investigations, treatments and transfers that can be of no benefit and harmful to people.

  8. Not offer unreasonable hope                Unless required by law, clinicians are not obliged to initiate or continue treatments that will not offer a reasonable hope of benefit or improve a person’s quality of life.

  9. Continue after a person has died       Care of a deceased person, and bereavement care for families and carers, extends beyond the death of the person.

Essential Elements of Safe and High-Quality End-of-Life Care (ACSQHC, 2023)

A.  Care Processes:  Delivering comprehensive end-of-life care

1.      Recognising end of life

Appropriate interventions in the last 12 months of life are outlined (p. 8).

2.      Person-centred communication and shared decision making

3.      Multidisciplinary collaboration and coordination of care

4.      Comprehensive care

5.      Responding to concerns

B.  Organisational Processes:  Supporting comprehensive end-of-life care

6.     Leadership and governance

7.     Support, education and training

8.     Care setting

9.     Evaluation, audit and feedback

10.     Systems to support high-quality care

Scope of Practice

Social workers support people to make change in their life to improve their personal and social wellbeing. They have knowledge of human behaviour and development, life cycle stages, families and social networks, disability and health, including mental health. Social workers may counsel people or be involved in advocacy, community engagement and social action to address issues at both the personal and social level.

Start with assessment (bio-psycho-social-spiritual). Assessment is about seeing the person within the context of their illness and how it’s affected them psychologically, spiritually, financially, socially and legally (e.g. advanced care planning, powers of attorney).

It is essential to support the carer (advocacy with Centrelink, schools, place of work, or just with counselling). Sometimes couple and/or family counselling is important. Linking children up with music and art therapies can be of assistance in coping with their parent’s illness and in bereavement.

Social workers can also provide bereavement support follow up: for 13 months after a loved one dies (one on one counselling, ceremony of remembrance, support groups).

Social workers also need to be aware of the mental health of people: people often come to palliative care with a diagnosed illness such as schizophrenia or a personality disorder, or anxiety or depression. This impacts on how we treat people and the interventions we use.

A Strengths Perspective on Caregiving

Caregivers exhibit many strengths when caring for someone at end-of-life (Hughes, 2015). While describing the total experience as “hard work”, “intense”, “distressing”, “horrendous”, and “traumatic”, caregivers also said it was “a privilege”, “rewarding”, “very, very satisfying”, “probably the best family time [since being a child, but also] the worst”, and “a great thing to be able to do”.

A deep investigation of carers’ experiences showed in spite of the references to exhaustion, distress, fear, confusion, doubt, guilt, worry, and deep loss, a range of strengths operated. In this study, the strengths that emerged included: courage, determination, acceptance, humour, and empathy. People’s strengths were not clearly apparent, obscured beneath stories of struggle, adversity, and irreplaceable loss, as well as from the chaos generated by grief, and a widespread propensity to direct attention towards the negative aspects of caregiving and bereavement.

  • Courage: an attitude which enabled people to do what they believed needed to be done at a particular point in time. Courage operated in conjunction with fear and dread. Other manifestations included challenging authority, assuming responsibility for unfamiliar duties, and remaining in the presence of suffering.

  • Determination: Determination assisted people when others criticised their efforts or undermined their ability to do the best for the person who was dying.

  • Acceptance: Acceptance involved making a conscious decision to be open to what was happening, often resulting in a sense of comfort. Acceptance was also evident in carers allowing the depth of grief to be felt, signifying that they had experienced a profound and life-changing loss. Seeking and accepting help was also a strength demonstrated by participants.

  • Humour: Many participants employed humour to help manage adversity. Sharing their humour with others was a prosocial behaviour that helped to lighten situations and ease anguish. Remembering amusing moments or making light of some incident prevented people from being overwhelmed by deep sadness or grief.

  • Empathy: Carers’ skills in observing nonverbal cues often enabled them to intuit what another person was experiencing, evident in the experiences of seeking pain relief or staying with their significant other person as death approached. People’s empathy often extended beyond the person who was dying to include others in their community, particularly children and the elderly.

Social Work Palliative Care Standards (more detail at the Palliative Care Social Work Australia site above)

  1. Values and Ethics Social workers demonstrate that the values of social work are integral to their practice in palliative and end or life care. They uphold their ethical responsibilities and they act appropriately when faced with ethical problems, issues and dilemmas.

  2. Professionalism Social workers demonstrate active promotion and support of the social work profession in the provision of palliative and end of life care, act with integrity and ensure accountability.

  3. Culturally Responsive and Inclusive Practice Social workers have a good understanding and knowledge of cultural diversity in order to work in a culturally responsive and inclusive way in providing palliative and end of life.

  4. Knowledge for Practice Social workers have (and obtain) the knowledge required for effective practice in palliative and end of life care.

  5. Applying Knowledge to Practice Social workers demonstrate the skills required to implement knowledge into practice for the provision of palliative and end of life care, while being mindful of the social work commitment to the human rights perspective.

  6. Communication and Interpersonal Skills Social workers demonstrate skills required to communicate and work effectively with others in the delivery of palliative and end of life care.

  7. Information Recording and Sharing Social workers are accountable and responsible for the information they collect, share and keep in the provision of palliative and end of life care.

  8. Professional Development and Supervision Social workers demonstrate commitment to ongoing learning through supervision and continuing professional development of self and others. Professional supervision of social work practice is essential to working effectively in palliative and end of life care.

Relevance of social work

The individual should be at the centre of decision making with decisions tailored to each individual. Goal setting for palliative care requires full and open discussion with the patient, family, carer and all relevant medical and nursing staff around their wishes and needs.

After addressing immediate physical needs, patients’ overriding concerns are often for people that are important to them and family members, or how to pay the bills, or how to stay ‘me’ while grappling with what it means to have lost the ‘future’ they and those around them had taken for granted.

People with a palliative illness often experience a progressive loss of meaning as their condition worsens and their health declines towards the ultimate loss of identity, death itself. Different illnesses typically affect the individual’s function over time—cancer (sudden deterioration close to death), organ failure (steady deterioration with death coming from an (sudden) acute episode) and dementia/frailty (low baseline function steadily deteriorates). It is not difficult to imagine how empowering and reassuring it could be to talk to someone about how you see yourself, what is important for you, to be encouraged tell decision makers what you want, and how care can be personalised for you from an early stage, and have that conversation continue with various professionals involved in your care as the illness progresses.

Discuss end of life arrangements (guardianship, power of attorney, etc.) at least twelve months before death.This prevents overuse of therapies that try to extend life; instead, interventions should include early conversations about patient care goals and values, family support, carefully titrated pain control with frequent follow-up, non-pain symptom management, and psychosocial and spiritual support.

Conversations About the End-of-Life

  • Don’t panic!

  • Don’t avoid the question or aim to close it down with well-meaning euphemisms or busyness.

  • Don’t rush a response based on your own discomfort.

  • Keep communication open in as far as you can. Gently probe to find out what’s behind the question: “What makes you ask that?” or “How are you feeling?” or “What is your biggest worry at the moment?”, “Are you feeling worried/afraid?” or “What do you understand by what the doctor said?” or, simply “How can I help?”

  • It’s also okay to say “I don’t know” if you don’t. It might be appropriate to say you cannot answer the question, but you will try to find someone that can help

  • Always remember: 1. Deal with people’s concerns before getting into details. 2. Take a moment to ask: what is this person most worried about at the moment. 3. You may not have the answer, but you can listen and link the patient up with someone who can.

Spirituality in Palliative Care (Puchalski, 2001).

Religion and spirituality form the basis of meaning and purpose for many people. Patients may be asking question such as: Why is this happening to me now? What will happen to me after I die? Will my family survive my loss? Will I be missed? Will I be remembered? Is there a God? If so, will he be there for me? Will I have time to finish my life’s work? It is difficult to know what to say; there are no real answers.

One can begin with the following:

  • Practising compassionate presence—i.e., being fully present and attentive to their patients and being supportive to them in all of their suffering: physical, emotional, and spiritual

  • Listening to patients’ fears, hopes, pain, and dreams

  • Obtaining a spiritual history

The FICA method of taking a spiritual history

F Faith and belief. Ask: Are there spiritual beliefs that help you cope with stress or difficult times? What gives your life meaning?

I Importance and influence. Ask: Is spirituality important in your life? What influence does it have on how you take care of yourself? Are there any particular decisions regarding your health that might be affected by these beliefs?

C Community. Ask: Are you part of a spiritual or religious community?

A Address/action. Think about what you as the health care provider need to do with the information the patient shared—e.g., refer to a chaplain, meditation or yoga classes, or another spiritual resource. It helps to talk with the chaplain in your hospital to familiarize yourself with available resources.

  • Being attentive to all dimensions of patients and their families: body, mind, and spirit

  • Incorporating spiritual practices as appropriate

  • Involving chaplains as members of the interdisciplinary health care team

Music at End of Life

From Pearson (2022)

Music has a rich and valuable role to play at the end of life. When we are involved in someone’s dying process, music can add a richness to this mysterious, often painful, and very often beautiful experience.

Introducing music into a care relationship can be intimidating for some, although it doesn’t need to be. Whether you are a volunteer, a health care provider, family member of a person who is dying, or currently receiving palliative care yourself, music can find its way into the dying process and help make it more meaningful.

  1. Speak Through Songs: pick a piece of music that expresses something you would like to say to your loved one or client. It can be one song, or an entire album. It can be happy, sad, reminiscent, angry, silly, pensive or forlorn; the music can tell a story, speak a prayer, or say I love you. Listen to the recording together, or if you’re a performing musician, play or sing it. You can discuss it after or simply let the music hang in the air and speak for itself.

  2. Songs for Every Year: reflect on the life of the person who is dying. What is one song that represents each year of this person’s life? It can be one song a year or one song a decade. Pick the songs – you can create a playlist or CD of them all, discuss whether to use some of them for a future memorial service or funeral, or simply use the song titles as a means for reviewing a life lived.

  3. Sing, Sing, Sing: Sing together. Sing your favourite songs. Start with kids’ songs if that’s easier. Singing silly songs can beget laughter, which is the best medicine of all. Sing songs that have personal significance – hits from teenage years, lullabies sung to children, songs from a religious or cultural tradition if that is relevant. Singing is a powerful healing tool that humans and other mammals use instinctively.

  4. Create Supportive Playlists: Music can be chosen selectively to be played at different times of day, for different purposes. Find live or recorded music to play for relaxation before a stressful procedure, for rest at bedtime, or for pain management. Make a schedule if that is helpful. Experiment with different kinds of music: maybe someone finds Celtic harp the perfect bedtime soundtrack, while Metallica seems to get them through a dressing change or bed transfer.

  5. Ask the Questions: Try to avoid asking, “what kind of music do you like,” and ask instead, “what music has been meaningful in your life?” You will be inviting a richer scope of answers. This can be a catalyst for a deep, connective conversation with someone. Music accompanies people on their life journeys and almost everyone will have some kind of profound story to share about how music has supported a meaningful moment in their lives.

Anyone can incorporate music into care. Music is inherently human, healing, and connecting, and music care happens in relationship. Bringing music into the dying process can add meaning, depth, and soulfulness to all involved (Pearson, 2022).

Discrimination against LGBTIQA+ People in Palliative Care

From Doherty & Barrett (2021)

Palliative care for LGBTIQA+ people with life-limiting conditions should be accessible, inclusive and affirm their right to dignity and respect. However, palliative care services are not living up to this ideal.

Palliative care services today still discriminate against patients’ family of choice and continue to preference biological families even though LGBTIQA+ communities are more likely to involve their family of choice rather than their family of origin when in palliative care.

Recent research revealed high rates of discrimination or “anticipatory fear” of discrimination that limited access to palliative care for people in the LGBTIQA+ community. This discrimination is a result of the experiences of partners, friends and families during the HIV/AIDS epidemic that happened 40 years ago. There is a need for workforce education and training, inclusive policies, and procedures and services that are respectful, compassionate and person-centred.

Barriers to palliative care for sexuality and gender diverse people include:

  • a lack of recognition of chosen family partners, carers and next of kin,

  • discrimination and stigma,

  • social isolation and loneliness,

  • fear of sub-standard care from faith-based palliative care providers,

  • disrespect for bodily autonomy,

  • fears of being mis-gendered, and

  • failure by staff to use preferred pronouns.

Because of this LGBTIQA+ people can delay palliative care, not disclose their sexuality, and report fatigue when having to educate healthcare professionals about their needs.

What works well?

  • Dignity and respect for the chosen family and partner.

  • Correct gendering.

  • Using a person’s correct name and pronoun.

  • Allowing the partner to stay in the room with a patient at end of life.

Practice Approach

Social workers must work in partnership with people they offer support to. They work alongside other professions, agencies, organisations and as part of the wider community in which they are based. Social work expertise complements the knowledge of others such as nurses, occupational therapists, physiotherapists, counsellors, psychologists, advocates, chaplains and doctors; as well as the inherent wisdom of communities. Social workers value people as individuals, and ensure their wishes and needs are respected at end of life and when bereaved.

Ijapo et al. (2023) suggest it is imperative for health care professionals to have the necessary skills for identifying the physical signs of impending end-of-life (EOL), and initiate discussions with the dying person (if possible) and family surrogates about the naturalness of dying and the limitations of medical interventions. During discussions, health care professionals must use clear terms, such as, the patient is dying and will die, particularly when clinical evidence shows the patient is actively dying. Clinicians should avoid using ambiguous statements such as “patient may not improve” “your loved one’s illness is very serious” and “prognosis is guarded.” The use of these statements may cause misguided assumptions or lack clarities to adequately inform patients/families about the impending death. Anecdotal clinical experience shows that families of dying patients can cling to any news that gives them the slightest ray of hope during EOL discussions.

The authors then outline the clinical signs and symptoms that show end-of-life is imminent (Ijapo et al., 2023).

Decreased Food Intake and Impaired Hydration                 Terminally ill individuals nearing EOL often refuse to eat and drink due to lack of appetite.  When a terminally-ill individual starts refusing to eat or drink as they approach the EOL period, it is important to provide appropriate education and support for family caregivers, explore any prior advance directives and explain to families that the most available research evidence and experts’ recommendations agree that careful (comfort) hand feeding as tolerated is the recommended standard of care.

Intractable pain                 Terminally-ill individuals may experience high burden of intractable pain and other distressing symptoms as they approach the final moments of life.  It may present with nonverbal cues of pain that include agitation, restlessness, grimacing, guarding, moaning, crying, shouting, tense or rigid body, short, rapid breathing, and unexplained sweating, among others.  Clinical and research evidence show that opioids are effective for intractable pain management in terminally-ill individuals.

Terminal Delirium           The best evidence suggests that almost all actively dying persons will have a hypoactive (sluggish, drowsy, in a daze, reduced interaction) or hyperactive (restless, anxious, rapid mood swings) delirium in the days to hours before death.

Death Rattle        This occurs from noisy breathing caused by the accumulation of mucus secretions in the respiratory tract and may potentially lead to breathing discomfort for the dying person. Nearly 80% of people die within 48 hours of its onset.

Respiration With Mandibular Movement (RMM)                 RMM is an abnormal breathing pattern where breathing becomes very shallow, and the mouth opens as a result of periodic mandibular jaw movement that occurs during inspiration. RMM may be associated with gasping and period of apnoea between breaths.  

End-of-Life Dreams and Visions (ELDVs)                Not uncommonly, actively dying individuals may report having dreams or some visual hallucinations where they report seeing deceased loved ones, friends, and/or family members who were long dead. These ELDVs often occur when death is imminent within days or hours before death, but may also occur about weeks or months before death. 

Terminal Lucidity             This is a period when a critically-ill person transiently experiences increased alertness, energy surge, and an unexpected return of mental clarity and memory functioning days, hours or minutes before death. Providing appropriate education to family caregivers enables them to treasure that last moment with their dying loved ones by creating good memories, and at the same dissuades them from embracing any false hope that the dying person has started to improve.

An Approach That Could Be Used

1. Assess the emotional, social, spiritual and financial needs of the patient and family

  • Bio-psycho-social-spiritual assessment of person and immediate carer; identify any cultural issues

  • It may be appropriate to use the psycho-existential symptom assessment scale [ Psycho-Existential Symptom Assessment Scale (PeSAS) ] to assess the following symptoms: level of discouragement, entrapment, hopelessness, pointlessness, loss of control, loss of roles, anxious, depressed, wish to die and confusion.Topics 9 and 10 in the End of Life Essentials resource in the Supporting Material below will guide social workers in using this assessment scale.

2. Consult with and access advice, information, and input from other allied health professionals as appropriate. For example, source a palliative care volunteer to

  • Provide needed non-medical services, letter writing, errands, and respite time for family

  • Provide companionship and support to patient and family

  • Provide support at time of death and during bereavement

3. Develop and continually refine a care plan to meet identified needs of the person, family and carers (practical, emotional, psychological and spiritual support). Do this from a rights and justice perspective by empowering the person (and or with the carer/family) to make decisions and exercise choice in their care and decision-making to get the support needed. (Refer to the section above on the strengths of caregivers.)

During initial assessment and throughout the journey of caring, it is important to discover and rediscover carers’ strengths by asking such questions as, “How have you managed so far? What has enabled you to continue caring given all the challenges you’ve had to face? What are your hopes? What would be helpful to enable you to achieve your goals?”.By employing a spirit of curiosity, being sensitive to cultural and structural contexts, respecting diversity, and applying skills of careful observation, listening and understanding, a strengths orientation promotes a person-centered approach in which “the helping relationship becomes one of collaboration, mutuality and partnership”.

4. Provide ongoing emotional and bereavement support before and after death. For example:

  • Direct counselling:

§ Collaborative and supportive listening

Ø Are you feeling worried about dying? What has been going on?

Ø I wonder whether there’s something you want to talk about?

Ø Do you want to talk about how you’re feeling?

Ø Gently probe: “What makes you ask that?” or “How are you feeling?” or “What is your biggest worry at the moment?”, “Are you feeling worried/afraid?” or “What do you understand by what the doctor said?” or, simply “How can I help?”

  • Use the relevant social work practice approach, e.g. grief and loss, carers, dementia

  • Refer the terminally ill person and carer/family to appropriate community agencies if necessary (both physical and online)

  • Discuss end-of-life issues, e.g. Enduring Guardian, Power of Attorney, “do not resuscitate”

  • Provide resources around what happens when someone dies

  • Consider suggesting music and art therapies for children

5. Mobilise social support

  • With permission, make contact with friends of the person, carer and family, urging them to remain part of the family’s life

  • Help friends, families and partners to feel involved in care and decision-making

  • If appropriate, empower the person and those close to them to work towards completion of any unfinished business and say their goodbyes

6. Provide options if financial, legal and spiritual support is necessary. For example:

  • A pastor or other appropriate person for spiritual support (providing comfort and helping to relieve isolation)

You could use the FICA approach (outlined below in Background Information - the Spirituality section)

  • A financial counsellor

  • A solicitor to arrange power of attorney and enduring guardian provisions

  • A funeral director

7. Advocate for the person or family if necessary

  • For people’s rights including supporting them to access the information and help they need

  • Around legal and financial issues

  • With the care team to promote best outcomes

  • Organise respite care or placement in a residential aged care facility

8. Provide or set up a procedure for bereavement support follow up (e.g. counselling, ceremony of remembrance, support group). Palliative care volunteer organisations may help with this.

Supporting Material

(available on request)

CareSearch provides tools to help the person, carer and family. It also has links to relevant research and practice approaches.

Association of Palliative Care Social Workers. (2016). The role of social workers in palliative, end of life and bereavement care. Retrieved from

The Association of Palliative Care Social Workers (UK) outline six practical steps (with accompanying bullet points) that social workers can progress through to support end of life and bereavement care. The steps are:

1. Discussion as the end of life approaches

2. Assessment, care planning and review

3. Coordination of care

4. Delivery of high-quality care in different settings

5. Care in the last days of life

6. Care after death

As well as the two resources below, Palliative Care Australia has resources for supporting Aboriginal and Torres Strait Islanders, LGBTI, older people, prisoners and their families, refugees and asylum seekers, and people in rural and remote areas.

End of Life Essentials (education resource from CareSearch). (you will have to register to access the courses).

Information about the following End of Life Essentials topics can be forwarded if requested:

  1. Dying – a normal part of life

  2. Patient-centered and shared decision making

  3. Recognising end of life (including SPICT schema)

  4. Goals of end-of-life care (supporting families, Indigenous palliative care, family meetings)

  5. Effective teamwork (including addressing conflict)

  6. Responding to concerns

  7. Imminent death

  8. Paediatric end-of-life care

  9. States of mind at end of life

  10. Assessing states of mind at end of life including suicidal, anxiety and depression.

ACSQHC: Australian Commission on Safety and Quality in Health Care.  (2023). Essential elements for safe and high-quality end-of-life care

Indigenous Palliative Care (my summary of various sources)

Ijaopo, E. O., Zaw, K. K., Ijaopo, R. O., & Khawand-Azoulai M. (2023). A review of clinical signs and symptoms of imminent end-of-life in individuals with advanced illness.  Gerontology and Geriatric Medicine, 9, 1-15. 

Doherty, L, & Barrett, A. (2021). Palliative care needs to address end of life discrimination experienced by LGBTIQ+ people. Retrieved from

Facing End of Life: a guide for people dying with cancer, their families and friends.

Australian Government has information about death and bereavement that may be useful for people:

palliAGED Practice Tips for Careworkers in Aged Care (2019)

Pearson, S. (2022). 5 ways to use music at the end of life. Retrieved from

Puchalski, C. M. (2001). The role of spirituality in health care. BUMC Proceedings, 14(3), 352-357.

Hughes, M. E. (2015). A strengths perspective on caregiving at the end-of-life. Australian Social Work, 68(2), 156-168.


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