At Bare, we’re more than just a funeral provider. Behind the scenes, our team is actively working with aged care, palliative care and healthcare professionals to transform the way we approach end-of-life and death care, which includes teaching patients, families and healthcare workers how to achieve a good death. 

There are many interpretations of what a good death can actually mean for an individual. We’ve pulled together several common elements of the dying experience into a framework that can provide guidance for end-of-life carers, particularly in palliative care.

In this article, we’ll explore six key elements that incorporate a good death, and how they can be addressed in palliative care. 

What is a good death?

A good death is defined as patient-centred care where the physical, emotional, psychological, social and spiritual needs of the patient are addressed. This can include end-of-life planning and getting affairs in order, managing pain and symptoms, getting a say in where they die and being treated with dignity and respect.

It’s also important to note that the meaning and implementation of a good death can vary depending on the patient’s cultural, religious and personal beliefs.

How is a good death affected by palliative care?

Palliative and aged providers are stretched thin providing care for their patients, so the focus on their physical health and symptoms is often prioritised over any emotional and social care. Many palliative care facilities may also face limitations on staffing, funding and external resources which inhibit holistic care.

There also may be a lack of specialised end-of-life training and education, such as how to connect, have significant conversations and overall address the emotional needs of the patient, not just the physical needs.

Six elements to achieve a good death in palliative care.

Each element can’t stand on its own in achieving a good death; a good death can only truly be achieved if all elements are addressed. We’ve also included questions for families and Next of Kins to consider when assessing their loved one’s care. Keep reading to learn more.

1. Care.

Effective symptom management is essential for ensuring comfort and dignity during the dying process, and is one of the primary goals of palliative care. Physical pain and discomfort can often lead to psychological and emotional stress, so ensuring patients have a good death requires their comfort and symptoms to be considered, regularly monitored and addressed when necessary.

Research from The Role of Palliative Care at the End of Life - Ochsner Journal supports this. “While dying is a normal part of life, death is often treated as an illness. As a consequence, many people die in hospitals, alone and in pain. Palliative care focuses primarily on anticipating, preventing, diagnosing, and treating symptoms experienced by patients with a serious or life-threatening illness and helping patients and their families make medically important decisions. The ultimate goal of palliative care is to improve quality of life for both the patient and the family, regardless of diagnosis.”

Listening to the patient’s concerns and needs is essential to providing optimal care. Such a simple step in the process can have a monumental effect on how a patient is feeling throughout their final days and the consequential impact of achieving a good death..

Feedback questions for families to consider:

  • Was your loved one's pain well controlled during the dying process?
  • Did your loved one feel supported in managing their symptoms, including psychological and emotional distress?

2. Comfort.

Palliative staff and the care team are responsible for the clinical elements of care during the dying process. What is often as important, but usually far less understood, are the social elements of care that assist in supporting a dying individual and their loved ones.

Usually, these comforts relate to the physical environment surrounding the deceased. This will differ from person to person - lights being dimmed, music being available, aromatherapy being offered, and the presence of loved ones during the dying process can make the environment more comforting for the dying person. While this is often provided by the family or loved ones of the dying, where it doesn't happen, it can be provided by health and social workers who are responsible for the individual.

Making accommodations to comfort the family of the dying person should be considered, which could include encouraging use of pastoral care services, spending time with them and ensuring that they are taking care of their own health and wellbeing.

Comforting sentences such as ‘we have done everything to prevent pain’ or ‘your relative received the best possible therapy’ can give the family assurance during this time and allow them to accept that everything is being done, which can provide comfort. 

Feedback questions for families to consider:

  • Were your loved one’s needs addressed? If any concerns were raised, were they dealt with in a timely and respectful manner?
  • Were you made aware of any pastoral care or support services available to families?

3. Companionship & Community.

A basic principle of a good death is that no-one should die alone. Companionship, and a social connection to community, can greatly  increase the opportunity to endure difficult situations and reduce the fear and anxiety associated with the dying process. Companions can also act as advocates, and bear witness during the dying process, supporting the individual through the other components of this framework.

Often, and preferably, this companionship is provided by family and friends of the dying.  In the absence of these relationships, this void can be filled by death doulas, or by social and healthcare workers supporting the individual through the process.

Healthcare workers often form strong emotional bonds with their patients, particularly if the patient has been receiving care for months or even years. Whilst physical care is often the priority, when regularly attending to a patient, they may notice the patient’s desire to spend more time with the worker, from physical touch such as holding their hand to stimulating conversation. 

Here is a case study from Emotional Bond: The Nature of Relation in Palliative Care for Cancer Patients: “In one of my shifts, I went to sit beside a patient. She took my hand and said that I had a rapid heartbeat. After monitoring the patient and pulse oximetry, I explained to her that her heart and breathing were normal, but I realised that she needed someone beside her. Again she held my hand and I saw she was in need of attention.” 

Feedback questions for families to consider:

  • Did your loved one have immediate family during the dying process?
  • Did your loved one feel that their relationships with significant others were supported and valued during the dying process?
  • Did your loved one feel socially and emotionally supported during the dying process?
  • Did your loved one build authentic relationships with care or social staff?

4. Control.

It has always been well accepted that a dying person should have a sense of control over their own care and decision-making, including the ability to refuse or request certain treatments or interventions.

Control can look like collaborating between the patient, family and healthcare workers so together they can design the last days or weeks as well as possible, as well as getting affairs such as a will, advance care plan and final wishes in order. 

Not only does communication about end-of-life improve patient satisfaction with care, but can give the patient some control in how they spend their final days, as well as how they say goodbye. 

For a patient to have a full sense of control, healthcare workers should inform patients and families of anything medically or legally necessary to ensure the patient’s wishes and desires are carried out, even when they are no longer able to make decisions. This includes:

Feedback questions for families to consider:

  • Did your loved one have an advanced care plan and/or appt of medical representatives in place? 
  • Did your loved one have a non-clinical end-of-life plan in place (EPOA, Funeral Preferences etc)?
  • Did your loved one feel that they had control over their care and treatment?

5. Communication.

Open and honest communication is essential for ensuring that the dying person's wishes are respected and that their care is tailored to their individual needs, particularly when circumstances change. While a prepared advance care plan is the right starting point, ongoing communication is crucial to ensure a dying person’s sense of self is not lost. Practically, this could involve discussions about the type of care they wish to receive, as well as conversations about the dying process itself, including what to expect as death approaches.

In the absence of express wishes to the contrary, it is also important this communication extends to the loved ones of the dying. Understanding the process as it happens can support the grieving process, and help loved ones process the experience more readily.  This communication should extend to what the deceased’s loved ones should do to practically prepare themselves, and their immediate options after a death.

Often loved ones are left grappling on how to facilitate these kinds of conversations, so it’s essential that healthcare and palliative care workers are able to guide patients and families about the state of their health, any next steps required and taking into consideration wishes of both the patient and their family.

Barriers towards adequate communication from healthcare workers can include fear of causing distress, navigating patient readiness and feeling unprepared for these conversations.

“Research has shown that many clinicians continue to avoid these discussions due to a fear of destroying hope or causing harm… However, hope is not necessarily incompatible with knowledge of life-threatening disease or prognosis, and can mean more than simply survival.” Communication in palliative care: talking about the end of life, before the end of life', Postgraduate Medical Journal.

Feedback questions for families to consider:

  • Did your loved one’s care team continually communicate with them about what was happening and the decisions that were being made?
  • Did you feel that you and your loved one's wishes and values were respected and incorporated into decision-making?
  • Was their privacy and dignity respected?

6. Cultural & Spiritual Considerations.

Cultural considerations in palliative and end-of-life care can refer to religion, ethnicity, sexuality and much more, and each patient may have different needs depending on their culture or beliefs.

Towards the end of life, many patients are drawn towards cultural practices and spirituality. While many of these patients may have actively participated in religion or spirituality throughout their life, there are often cases of desiring spiritual guidance from a priest, healthcare or pastoral care worker in the final days. 

Respecting and addressing spiritual and cultural needs can be just as vital as physical needs. It’s also important not to make assumptions based on the patient’s culture. 

Some cultural factors to consider include death being taboo; some cultures, such as Filipino and South East Asian cultures, do not openly talk about death and dying and do not wish for patients to be told they are dying due to their cultural beliefs. 

It’s also essential for healthcare workers to consider the relevance of religious beliefs when discussing death or imminent passing, particularly about the meaning of death, the existence of an afterlife, and belief in miracles. Being open to these conversations, even if they do not reflect personal values and beliefs, can help patients feel heard and respected, especially if a spiritual figure or family are not available for these kinds of conversations.

Feedback questions for families to consider:

  • Were any cultural or spiritual needs respected and incorporated into care?
  • Was the patient able to be visited by a spiritual figure if requested, e.g. priest, rabbi, minister or other religious representative?

7. Care for the Bereaved.

An often overlooked part of the dying experience has been the role of healthcare workers in supporting the experience of the deceased’s family and friends. In instances where a deceased has not taken ownership of some (or all) elements of the dying process, it is vitally important to the grieving process that the deceased’s family has support, and a feeling of control, through the end-of-life experience.  

Beyond that, it is important that the deceased’s loved ones are comforted through the experience, and in particular, directed to community resources that can help them navigate the grieving process, such as pastoral care or grief support groups.

One element of care that is often overlooked is the care of the deceased body, as the last memory a loved one has of the physical body can have an outsized impact on the grieving experience. Unless there are instructions to the contrary, and where possible, a deceased person should be washed, dressed and placed in a respectful place for family members or friends viewing the deceased after passing. Other elements of care to consider are a towel wrapped under the chin and ensuring the deceased’s eyes are closed.

Healthcare professionals may need to communicate with families that their loved one does not need to be moved immediately, and instead can stay in the room to give family and friends the opportunity to come and say goodbye. This is particularly critical if there will not be another opportunity to view the body, in the case of direct cremation. 

Feedback questions for families to consider:

  • When your loved one passed, did you feel you had a clear guide of what the next steps were for you?
  • When your loved one passed, were you given any packs or other resources to assist you in who to call or what to do?
  • Was practical support provided during the period following the death, such as assistance with funeral arrangements and financial planning?

Final thoughts on a good death in palliative care. 

Part of a good death is planning ahead, whether that’s prepaying for your cremation, writing down your final wishes or securely storing important documents and giving family members access.

If you’re interested in a Bare Prepaid Funeral, you can head to the link below for an instant quote for your area, or give our incredible Prepaid team a call on 1800 202 901.