Palliative Care (End of life care and comfort) 

Adjustment, support and palliative care for adults 

The following video explains palliative care in more detail. 

The terms End of Life and Last Days of Life have different meaning from that of Palliative Care. 

End of Life: "End of life" refers to the phase when a person's health trajectory indicates that they are nearing the final stages of their life due to a terminal illness or advanced age. During this period, the focus shifts from curative treatments to enhancing the individual's quality of life, comfort, and emotional well-being. The focus is on anticipating the needs of the person and families/whānau/carers so that the right care can be provided at the right time. 

Last Days of Life: this is the period when a person is dying. It is the period of time when death is imminent and may be measured in hours or days (Palliative Care Council 2015). 

End of life and last days of life 

Activity - Reflection 

Reflect on the differences between palliative care and the last days of life/end of life. 

Record your responses privately using the following documentation tool. Click the questions on the left tab, record your responses and click 'Create Document' on the last tab when you are ready to export it.  

Considered the model for quality, compassionate care for people facing life-limiting illnesses or injuries, hospice and palliative care involve a team-oriented approach to expert medical care, aggressive pain and symptom management, and emotional and spiritual support expressly tailored to the client's needs and wishes. Support is also provided to the client's loved ones. At the centre of hospice and palliative care is the belief that we have the right to live and die free of pain, and with dignity and that our families should receive the necessary support to allow us to do so.

Hospice Model

Hospice focuses on caring, not curing; in most cases, care is provided in the client's home. Care also is provided in freestanding hospice centres, hospitals, nursing homes, and other long-term care facilities. Services are available to clients of any age, religion, race, or illness.

Palliative Model

Palliative care extends the principles of hospice care to a broader population that could benefit from receiving this type of care earlier in their illness or disease process. No specific therapy is excluded from consideration. An individual's needs are continually assessed, and treatment options should be explored and evaluated in the context of the individual's values, symptoms, and changing goals. Palliative care may segue into hospice care if the illness progresses.

We need to recognise that palliative care is generally provided by a team and could include family, healthcare workers, doctors, nurses, psychologists, social workers and more. 

The role of a healthcare worker takes on profound significance when it comes to providing compassionate end-of-life palliative care for clients.  

Before we look take a closer look at the responsibilities and compassionate care practices that you may undertake, let's meet Jenny, a former hospice nurse. Jenny shares her thoughts on hospice and her and her family's journey through her illness. 

Providing physical comfort and wellbeing 

Healthcare workers play a vital role in maintaining the person’s overall comfort and this is a key aim of palliative care. This involves assisting with: 

• personal hygiene 
• positioning 
• Observing any changes in health 
• pain management 
• breathing problems 
• skin irritation, including itching 
• digestive problems 
• temperature sensitivity 
• fatigue 

Activity - Video and documentation

Watch this video from Hospice New Zealand about the last days of life and answer the questions below. Record your responses privately using the following documentation tool. Click the questions on the left tab, record your responses and click 'Create Document' on the last tab when you are ready to export it.  

Meeting Psychological and Emotional Needs

Managing distress, sadness, depression, and feelings of fear and isolation towards the end of life is important. If the person remains alert, offering opportunities for them to talk about what they are experiencing and feeling can help, as can providing support to family members and others close to the person so that they are also able to listen to the person and allow them to share their feelings. Other useful strategies include:

• Offer physical contact, such as holding hands, gentle massage, and physical contact during routine care such as bathing, feeding and administering medication.
• Provide a calm, comforting environment, with soft lighting, soft music and few people moving around. 
• Offer opportunities for the person to express their needs and wishes; continue to communicate even if there is little or no response.
• Be present with the person; for example, sit with them, talk or read to them, listen to what they say, let them know who you are and that you are there.

Many people would like to have close family and friends around them. It is also important to continue to recognise and acknowledge the person’s social connections, social roles and social status, so that they can retain a sense of identity and belonging. Family members, friends and others close to the person can talk about the significance of their relationship and what the person has meant to them in their lives. Ways you can support social needs include:

• People who are not able to be present might send a recording or video of what they would like to say to the person, or a letter to be read to the person.
• Sharing memories can be comforting and can add to a sense of peace.
• Reassuring the person about practical issues such as who will take care of things once they are gone can also help.

Providing spiritual needs

Towards the end of life, whether or not the person has a specific religious faith, people often feel a need to add meaning in their lives and to take care of unfinished business, such as ending disagreements with others, making peace with past experiences, or resolving unsettled issues. Counselling can be provided to assist in this process. People facing death often experience spiritual or existential distress as they seek meaning in the life they have lived. Supporting someone by listening to their fears and doubts and helping them to identify and focus on what has given them a sense of achievement, satisfaction and meaning, can decrease feelings of emptiness, despair and pointlessness. Religious belief may be a source of this kind of comfort, as may feeling connected to people, places, cultural traditions and particular experiences. Different people and spiritual comfort in different things. Simply listening and allowing the person to reflect on these aspects of their life can be a powerful way to offer spiritual comfort.

Activity - Quiz 

Go to Hospice New Zealand and use the Palliative care handbook to find out more about addressing spirituality for people at end-of-life.

Answer the following questions based on the text above. Select 1 correct answer in each question. 

The New Zealand Palliative Care Strategy recognises that all people who are dying and their family/whanau who could benefit from palliative care have timely access to quality care services that are culturally appropriate and are provided in a coordinated way. Culture refers to a set of beliefs, values, norms and practices that are learned, shared and influence a person’s thoughts, expressions and actions. As a healthcare worker in NZ aged care you need to consider cultural care as part of your support for individuals and their Whanau. Do not hesitate to ask about relevant cultural aspects of caring for a resident.

Individualising care

Arohanui Hospice has developed these potential conversation starter questions that can guide conversations and include a background image of Te Whare Tapa Whā (Durie 1985) on one side, as a reminder of the need for a holistic approach to care. On the other side, information is provided to guide conversations to ensure that care for people can be personalised. Be aware of customs that respect the resident and their family members. Understand and respect that people have different reactions towards death and dying. Remember that just because someone can understand English they may not be able to read it as well. Communicate in ways that are clear and appropriate. Avoid jargon. We need to be aware of how our own cultural beliefs, values and practices may influence the way we deliver care.

Activity - Watch

Meet hospice patient Waana who talks about the bond of whanau. 

In an aged care palliative residential Health and Wellbeing setting, collaborating with an interdisciplinary team is crucial to ensure comprehensive and holistic care for residents. As a support worker, your role involves various care processes to facilitate this collaboration:

Activity - Case studies 

Scenario 1

Aroha, a compassionate and skilled support worker, plays a pivotal role in an interdisciplinary team caring for Hēmi, an elderly resident receiving palliative care. Hēmi is in the final stages of his journey due to advanced heart failure. The interdisciplinary team includes nurses, a doctor, a social worker, and a spiritual advisor. Aroha works alongside the nursing team to ensure Hēmi's comfort is maintained. She assists with repositioning, personal care, and managing any discomfort and pain he may experience. Aroha communicates changes in Hēmi's condition promptly to the nursing team, allowing them to make necessary adjustments to his care plan. Aroha records her interactions with Hēmi, including observations, care provided, and any concerns he or his whānau may express. This accurate documentation serves as a valuable resource for the interdisciplinary team, allowing them to stay informed about his progress and needs. Aroha actively participates in team meetings, sharing her insights and observations about Hēmi's physical and emotional well-being and any concerns from Hemi’s whanau. Her effective communication ensures that the nursing team, doctor, social worker, and spiritual advisor are all informed about his needs, allowing them to collaborate efficiently.

Record your responses privately using the following documentation tool. Click the questions on the left tab, record your responses and click 'Create Document' on the last tab when you are ready to export it.  

Scenario 2

Hēmi's condition is deteriorating due to advanced heart failure, and the focus has shifted towards ensuring his comfort and supporting his whānau during this challenging time. The interdisciplinary team consists of nurses, a doctor, a social worker, and a spiritual advisor. Aroha recognizes the importance of the whānau's emotional well-being and actively engages with them. She spends time with them, lending a compassionate ear to their concerns, fears, and hopes. Aroha listens to their stories, showing empathy and creating a safe space for them to express their feelings. Aroha takes the initiative to understand Hēmi's and his whānau's cultural preferences. She learns about their spiritual beliefs, values, and customs, ensuring that any care provided aligns with their cultural preferences. Aroha discusses these preferences with the interdisciplinary team to ensure a holistic and culturally sensitive approach to Hēmi's care. Aroha actively communicates with the social worker and spiritual advisor to gather insights into the whānau's emotional and spiritual needs. She collaborates with the team to provide emotional support, arrange culturally meaningful activities, and facilitate discussions that address the whānau's concerns and questions.

As a support worker providing care to patients at the end of life, you will undoubtedly encounter the profound and complex emotions associated with loss and grief among their whānau and families. The experience of losing a loved one can trigger a range of emotions, including sadness, anger, confusion, and even relief. Your role in these moments extends beyond physical care – you become a pillar of support, offering comfort, empathy, and a listening ear during a time when emotions may be overwhelming. Understanding the nuances of grief and loss and providing compassionate care can make a significant difference in helping families navigate this challenging journey.

Also, remember that as a support worker, you might feel the impact of loss and grief too. Being there for others during difficult times can be tough, and it's important to have tools and strategies to take care of your own emotions and mental well-being.

Primary Loss and Secondary Loss 

The primary loss is the initial, core loss that forms the foundation of the grief experience. In bereavement, this is generally the loss of a loved one. The initial grief response is usually attributed to this primary loss. 

Secondary losses follow or are associated with a primary loss. For example, in bereavement, secondary losses may include the loss of financial stability if the deceased person was the primary breadwinner, the loss of social connections if the individual who passed away was their primary source of social support, or the loss of a sense of purpose or identity if they relied heavily on the person who passed away. 

These secondary losses may initially be overlooked given the dominance of the primary loss. Health workers and individuals supporting someone grieving need to recognise the impact of these secondary losses. 

As support workers, you play a vital role in helping people navigate palliative care and feelings of loss and grief. It's important to understand the process of loss and grief so that you can provide the best possible support to those who are going through it. 

One of the most important things to remember is that there is no right or wrong way to grieve. Everyone experiences loss differently, and there is no "correct" timeline or set of emotions that people should be feeling.  

To further your understanding and gain knowledge and tools to support your clients, read and make notes in your preferred style. Whether you prefer jotting down key points, creating mind maps, or highlighting important information, find a method that resonates with you. Your future self will thank you later!

On this page you will find valuable information on loss and grief. Be sure to watch the video under ‘How do I care for someone who is grieving’ and take note of the organisations in New Zealand that provide support, advice and counselling to those affected by loss and grief. This could be valuable information you could share with your clients or family and whanau. 

Activity - Forum Reflection 

What information from healthy.nz about loss and grief did you find important? Write your thoughts in the loss and grief forum thread and read what your classmates found important. 

Part of a worker's role is to help individuals who have experienced losses to access relevant information and support from other sources. This may involve identifying materials and resources (e.g., books, brochures, websites) that might be helpful, as well as facilitating access to support available in the community or specialist services.

Before directing a person to any resources or service information, it is important to ensure that the information is current and suitable. For instance, some support organisations have religious affiliations, and some individuals will not be comfortable with this. Other resources, such as books and websites, may provide inaccurate or even harmful information or services, so it is crucial that you critically evaluate any resource before suggesting or providing it to an individual. Information also needs to be provided in a way that is understandable to the client. For example, the resources and the way you discuss them need to be developmentally appropriate and responsive to any language, intellectual, or comprehension needs the individual has.

Additionally, when sharing information or suggesting resources or services, you should:

• Be aware that grief may impact the client’s mental functioning; explain things clearly and slowly.
• Check in with the client frequently to see whether they have understood the information and/or options presented and whether this is useful to them, and to provide clients with the opportunity to give feedback. For example, you could say:
  • “Is this the sort of thing you had in mind?”
  • “Do you think that could be helpful?”
  • “No one option suits everyone. Should we consider a few other options?”
  • “Do you have any questions or concerns?”
  • “Should we go over that again?”
• Take care not to overload clients with a large amount of information at once.
• Ensure resources are culturally and developmentally appropriate.
• Access translated material in the language of your client where appropriate.

As well as helping clients access community resources and supports, it may also be useful to help clients use and build upon their natural support network (i.e., family, friends, neighbours, and groups they belong to). Some people are reluctant to ask for help or are unable to identify what specific assistance would be helpful.