As National Palliative Care Week draws to a close, many clinicians have been so busy providing palliative care in the current environment of strained services with increasing pressure, that we have not had a chance to reflect on or promote it.
One of the myths about palliative care is that it is only for end-of-life care, yet it is so much more than that. Palliative care seeks to improve quality of life for anyone with a life threatening illness, through the relief of serious health-related suffering – physical, psychological, social, or spiritual. Everyone has a right to access high quality palliative care when and where they need it.
Palliative care has always been a passion for me, even as a student nurse more than twenty years ago. In my first week as a new graduate nurse my grandmother had a heart attack and was admitted to hospital. A week of tests and attempts to stabilise her was excruciating to watch. I knew she was dying, and advocated strongly for a palliative approach. One of my aunts admonished me for ‘being too pushy’, telling my parents it was not my place to have these discussions and that I should stop.
I knew my Nan well, and that she had talked to me about dying for many years. She had suffered excruciating chronic pain for decades after a car accident, and often said she would rather be dead than have to continue to live with it. I didn’t give up. As I sat with her in the last hours of her life, listening to her last breaths, I felt an immense relief that she was finally given the dignity of pain control through a syringe driver. I went home knowing she was finally getting the care she wanted and deserved. She died that night.
Two decades later I am working as a specialist palliative care nurse practitioner, caring for older people living in residential aged care. On a daily basis I find myself having to advocate for provision of palliative care in the face of a medical model that attempts to prolong life for as long as possible, even though the person is seriously ill, deteriorating and saying they are ready to die. I am constantly dismayed at the unwillingness of some doctors to have discussions about realistic goals and provide good primary palliative care.
Just this week, our team was called to see a lady who had been unwell for several days with a respiratory infection. She was unable to swallow medicines, eat or drink. She was restless and groaning, and her doctor had been unable to visit, although had charted oral antibiotics that morning. They were capsules that she was unable to swallow. She was rapidly deteriorating and was suffering, and the nurses and carers were concerned and anxious that they didn’t have appropriate medications prescribed to relieve her symptoms. Her advance care plan stated she wanted to have good symptom control and did not want to go to hospital.
I charted injectable medicines and planned to commence a syringe driver to prevent pain and suffering. When contacted, her doctor did not want it to be started because ‘she should be given a chance to wake up’, and wanted all the oral medications to remain on her chart so they could be given the next day. Her family were present, they stated they wanted her to be kept comfortable and that she had been in severe pain when carers repositioned her.
I prescribed a low dose morphine syringe driver knowing that it was my responsibility to ensure she didn’t suffer, and that it was her right to receive palliative care. Less than 24 hours later she died peacefully, her family by her side.
The World Health Organisation explicitly recognises palliative care under the human right to health, stating that it should be provided through person-centered and integrated health services that pay special attention to the specific needs and preferences of individual.
In my own jurisdiction the Medical Treatment (Health Directions) Act states that a person who has given a health direction that medical treatment be withdrawn or withheld “ has the right to receive relief from pain and suffering to the maximum extent that is reasonable in the circumstances. In providing relief from pain and suffering to the person, the health professional must give adequate consideration to the person’s account of the person’s level of pain and suffering”.
The Good medical practice code of conduct for doctors describes what is expected of all doctors registered to practice medicine in Australia, acknowledging the vital role they play in assisting the community to deal with the reality of death and its consequences. It outlines the following responsibilities:
- “Taking steps to manage a patient’s symptoms and concerns in a manner consistent with their values and wishes.
- Providing or arranging appropriate palliative care, including a multi-disciplinary approach whenever possible.
- Understanding the limits of medicine in prolonging life and recognising when efforts to prolong life may not benefit the patient.
- Understanding that you do not have a duty to try to prolong life at all cost. However, you have a duty to know when not to initiate and when to cease attempts at prolonging life, while ensuring that your patients receive appropriate relief from distress.”
Why then, is it all so difficult? Why do nurses and families have to continue to ‘push’ doctors to plan and ensure access to medicines for end of life care?
Many older people living in residential aged care recognise that they are in the last years or months of life. They have spoken with their families, and have made their wishes clear in an advance care plan. They put their trust in their general practitioner and the nurses in the facility to provide the care they need and expect to have their symptoms managed appropriately in their last days. They, or their family, should not be put in a position where they have to fight for this.
Palliative care is everyone’s business. Please choose a health professional for yourself and your loved ones who is open to talk about death and dying. Choose someone who respects your wishes, is willing to provide the medications needed for good symptom control, or who will refer to another provider if they don’t have the expertise required.
Choose a health provider who will embrace palliative care: it’s your right.
#NPCW2022
