Like most laypeople, before I started nursing I had scarcely any understanding of just how much someone can endure before they die – my only experiences of pain were acute, so I had no awareness of the toll that chronic pain takes on one’s psychological defences, or how it affects endurance, sleep, tolerance, and the ability to withstand other symptoms. And that’s before you get to the emotional distress of leaving before you’re ready, or leaving those you love behind
Fortunately palliative care interventions can reduce most dying people’s pain to a manageable level. Other symptoms can also be managed – nausea, restlessness, and breathlessness are common – can also be well managed most of the time, for the majority of people who are dying. I’ll write about the exceptions next week.
I have cared for people who wanted to live every second available to them, and I respected and facilitated that. More common have been the patients who were dying well, their terminal symptoms managed by palliative care measures. And I’ve looked after too many people who should have had formal palliative care input, for this specialty is still too often confined to those with cancer, when we also need this expertise for those with end-stage diseases like heart, respiratory, and liver failure.
We need better palliative care services – improved access, especially in rural areas; early intervention; more funding for research, and for family support; and acceptance of its necessity in a wider range of cases, for anyone whose illness has assumed a dying trajectory.
Last year the Victorian government announced a long-term plan for the state’s palliative care services, including additional funding and goals that:
- people experience the best end of life care
- people’s pain and symptoms are well managed
- people’s preferences and values are recognised and respected in their end of life care
- better support for carers
- people are cared for in their place of choice
- where possible, people die in their place of choice (source)
These measures will make a significant difference to the overwhelming majority of people who are dying; for them, it will be what they need to die.
I love being a nurse; I love having the knowledge, skill, and compassion to improve my patients’ lives, to make them more comfortable with just the repositioning of a pillow, to reduce fatigue and pain with massage, to allay or hear their fears, to be able to explain what’s happening in language they can understand, to assess their condition and intervene before they deteriorate… and I appreciate the privilege of being able to make a little easier my dying patients’ transition from life.
I have witnessed some beautiful deaths – patients who were comfortable and at peace, who slipped away between one breath and the next, with families present or, sometimes, absent, because some people wait until they’re alone or at least only with nurses. I have helped implement care planned by expert palliative nurses and doctors, managed symptoms so that patients and their families could say goodbye without distress, performed mouth care to relieve the only discomfort of withdrawing hydration, massaged cream into cramped limbs, and read their unconscious faces and bodies to give boluses when pain or restlessness still reached them. These are the ideal – the deaths we all want for ourselves and for those we love. Thanks to the skill, knowledge, and expertise of palliative care nurses and physicians, these gentle and caring, comfortable and peaceful transitions are more common, and becoming available to more people.