Trigger Warning: Suicide, end of life and death are discussed below.
Seneca the Younger, an Ancient Roman Philospher described the anguish of a dying person 2000 years ago:
“Who is there in all the world who listens to us? Here I am, this is me in my nakedness, with my wounds, my secret grief, my despair, my betrayal, my pain which I can’t express, my terror, my abandonment. Oh, listen to me for a day, an hour, a moment, lest I expire in my terrible wilderness, my lonely silence. Oh God, is there no one to listen?” (Saunders, 1988).
End-of-life and palliative care is a topic that can be so tough to talk about – but we are all affected by it in some way, and it is a topic that merits greater awareness.
What is end-of-life and palliative care?
Palliative care focuses on the physical ailments associated with a life limiting illness, but also the psychological, spiritual and cultural needs of the patient (Myrcik, Statowski, Trzepizur, Paladini, Corli and Varrassi, 2021). This care can offer services, advice, information, referrals and support.
Palliative care is person centred, which means that you are at the centre of your care. You are involved in the planning and decision making, with your individual, cultural and religious needs considered. Your preferences and values are respected, and it is the goal of palliative care teams to ensure that you receive the care that is right for you.
Palliative care is required for a wide range of diseases. The majority of adults in need of palliative care have chronic diseases such as cardiovascular diseases (38.5%), cancer (34%), chronic respiratory diseases (10.3%),
AIDS (5.7%) and diabetes (4.6%). Many other conditions may require palliative care, including kidney failure, chronic liver disease, multiple sclerosis, Parkinson’s disease, rheumatoid arthritis, neurological disease, dementia, congenital anomalies and drug-resistant tuberculosis (World Health Organization, 2020). In 2022, there were 190,939 registered deaths in Australia, with chronic diseases being the leading cause of death in people aged over 45 (AIHW, 2023).
Quality of life is a key thing a positive behaviour support specialist can assist with, even when life is drawing to an end. Neglecting one’s quality of life at the end of their life can have detrimental effects both for the person and their loved ones.
Life for those in the end stages of life changes drastically, with an increase in pain and a decrease in mobility and social connections. A deteriorating quality of life can lead to premature death, through suicide or passive surrender (Rummans et al., 2000).
Schulz and Beach (1999) found that the caregivers of those in palliative care, with a deteriorating quality of life, had a 63% higher mortality rate than non-caregivers. This suggests that individual caregivers cannot tend to the dying unaided without significant risk to health and even an enhanced chance of death themselves.
What to do if you have a life-limiting illness?
Early stages:
- Access support networks – for the person and their families. This could be done through professional counselling or psychology, support groups and platforms like Carer Gateway.
- Depending on the type of disease, investigate Total Permanent Disability and income protection insurance
- Create an Advanced Care Plan that identifies your wishes, including what to do if the need arises for hospitalisation. These are legally binding documents to ensure your wishes are adhered to.
- Identify Enduring Guardians and Power of Attorney
The Stages of Dying and how to support
There are typically three stages towards the end of someone’s life. Each of these stages have various ways in which we can continue to support the person at the end of their life.
The 3 Stages of Dying in Palliative Care resource outlines these stages as follows:
Stage 1: The Early Stage of Dying
- This stage is usually marked by changes in appetite and drinking habits. You might notice meals are eaten in smaller quantities and with less enthusiasm.
- To support someone in this stage, we offer small amounts of food, sips of drink or ice chips but ultimately respect the person’s wishes. Force-feeding does not prevent death and can lead to distress for the person.
Stage 2: The Middle Stage of Dying
- You will begin to see changes in the person’s appearance and behaviour. During this stage, circulation and blood flow is focused on major internal organs, so extremities may be cold to the touch, or even darker. The person may be less responsive to external stimuli and may even drift in and out of consciousness. Even if the person may not be responding, we must assume they can still see and hear everything.
- To support someone during this stage, we can use extra blankets for warmth when circulation changes. Electric blankets aren’t recommended as the person may not be able to tell if they are too hot which can lead to burns.
- Speak softly and provide an ongoing gentle touch to the person if they like this. Include aromatherapy (where appropriate) and play soft music to stimulate the environment. Avoid asking the person questions that require an answer.
Stage 3: The Last Stage of Dying
- The final stage is characterised by significant changes in breathing, disorientation and restlessness. Bowel movements can change, or cease altogether. The person’s breathing will become shallow and irregular, with long pauses between breaths, which can grow more frequent as death approaches. Chest congestion, known as ‘rattling’ in the final hours is also common.
- To support someone during this stage, continue to provide gentle touch. It is most likely that the person can still hear those around them, so continue to speak softly. Although it is a distressing time, it is important to be calm and present for your loved one.
- A medical practitioner may also prescribe medication for restlessness, and other aids for continence may be used (The 3 Stages of Dying in Palliative Care, n.d.)
How can Behaviour Support and other Allied Health services help?
The importance of a multidisclipnary approach is invaluable. One person cannot be expected to meet the needs of a dying person, despite the advancement of medicine.
A multidisciplinary team in palliative care includes medical practitioners from various backgrounds, including psychiatry, general medicine and anesthesiology. Other specialists include social workers, chaplains, nurses, psychologists, behaviour support specialists, physiotherapists, occupational therapists and speech pathologists.
Involvement of all team members in a particular patient’s care is usually unnecessary, but having all team members available to the consulting palliative care physician ensures the widest possible range of responses to maintaining or improving QOL for the dying person and his or her loved ones, whilst reducing the risk of burnout for the allied health and medical specialists involved (Rummans et al., 2000).
Social connection remains to be an important aspect of quality of life, and pertains to spouses, friends, children and society. Illness changes people’s perception of their ability to maintain these roles. They may fear loss of relationships, decreased self-esteem, and abandonment (Rummans et al., 2000).
With the improvement of technology, this is becoming easier to alleviate, with text messages and video calls able to connect people who can’t be together in person. Support networks are also available through Health, NDIS and private organisations. It is important for clinicians to remember that they can also play a large role in this, and bring their practice back to caring.
Resist the urge to check watches or stand while talking.
Take a seat and have a conversation with the patient and their families, even if it is only brief. Resist the urge to offer solutions and interventions, but utilise active listening to ensure they feel heard.
A study by Bretscher and others in 1999 found something important. Patients who received palliative care at home were more likely to maintain their quality of life. This was true even when their physical health got worse.
It was suggested that this was because patients were able to receive a more holistic approach to their care. Accessing a multi-disciplinary team of allied health professionals including positive behaviour support and psychological services can help to support this care.
So, how can we take all of this information (and much more that we didn’t talk about here) and apply it to our practice?
- Work in a multidisciplinary approach and utilise funding from NDIS or Health where you can.
- Maintain quality of life by continuing to engage in social connections, spirituality and culture, and ensuring medical needs are met
- Meet the person where they are at in their journey
- Utilise supports such as counselling where you can.
If you, a loved one, or someone you care for is going through end-of-life palliative care and requiring support feel free to reach out to ORS by calling 1800 000 677 or submitting a general enquiry.
References
AIHW. (2023, July 11). Deaths in Australia, Summary. Australian Institute of Health and Welfare. https://www.aihw.gov.au/reports/life-expectancy-deaths/deaths-in-australia/contents/summary
Bretscher, M., Rummans, T., Sloan, J., Kaur, J., Bartlett, A., Borkenhagen, L., & Loprinzi, C. (1999).
Quality of life in hospice patients: a pilot study. Psychosomatics, 40(4), 309-313.
Carer Gateway https://www.carergateway.gov.au/
Myrcik, D., Statowski, W., Trzepizur, M., Paladini, A., Corli, O., & Varrassi, G. (2021). Influence of
physical activity on pain, depression and quality of life of patients in palliative care: a proof-of-concept study. Journal of Clinical Medicine, 10(5), 1012.
Rummans, T. A., Bostwick, J. M., Clark, M. M., & Mayo Clinic Cancer Center Quality of Life
Working Group. (2000, December). Maintaining quality of life at the end of life. In Mayo Clinic Proceedings (Vol. 75, No. 12, pp. 1305-1310). Elsevier.
Saunders C. (1988). Spiritual pain. Journal of palliative care, 4(3), 29–32.)
Schulz, R., & Beach, S. R. (1999). Caregiving as a risk factor for mortality: the Caregiver Health Effects Study. Jama, 282(23), 2215-2219.
The 3 Stages of Dying in Palliative Care. (n.d.). Www.svcs.org.au. https://www.svcs.org.au/palliative-care/information/stages-of-dying
World Health Organization. (2020). Palliative care. World Health Organisation. https://www.who.int/news-room/fact-sheets/detail/palliative-care
