Until recently, palliative care was a neglected area of medicine. But there is growing recognition that there often comes a stage in a patient's treatment when the emphasis needs to shift from cure to care. The support given to a dying patient can help them make the most of the time they have left, and to prepare for a good death.
One of the purposes of palliative care is to help a terminally ill patient to have a good death. This means looking after the medical, spiritual and emotional needs of the patient. Palliative care takes place in various locations such as hospitals, hospices, care homes and the patient’s own home.
No matter what your role in the care team, you share one goal: to make sure that each individual patient is given the best and most suitable care.
Professionals such as doctors, nurses, chaplains, therapists, psychologists, and others, are part of a palliative care team. Each individual will have a specific role in helping a terminally ill patient to have a good death. A large number of volunteers also give dedicated service to help patients die well.
Palliative care is ‘patient-centred’. This means that carers get to know a terminally ill patient and understand what matters to them in their last weeks or days of life. This includes understanding their physical, spiritual and emotional needs, as directed by them.
Sister Elizabeth Farmer of the Little Company of Mary, a retired palliative care worker, says you have to try to look beyond the sick patient to the spirit of the person:
“The spirit is an integral part of that person. Regardless of what their religion is their spirit is part of them, a gift from God. If you can discern that spirit, it will help you deal with any problem they have.”
Helping your patients to live as well as possible before they die is another principle of palliative care. Part of this is assisting them to find meaning and purpose as life draws to a close.
This can be a challenge because the dying person’s world usually shrinks around them as they become weaker. They may want fewer and fewer people around them and less and less activity.
Sister Elizabeth remembers that when her father was dying he wouldn’t talk and wouldn’t eat. She hit on the idea of showing him slides showing happy times of their shared holidays in Malta.
“Pop turned from the wall and looked at the slides. He started talking and remembering things. The next day when we did it, I slipped him some scrambled egg. Showing him the slides was the way to widen out his world again.
“When someone is dying, you can only widen out with memories, you can’t widen out with activity because they are too weak to be able to think. It’s all too much effort. You need to find the little windows for memories.”
Members of the palliative care team should work together to ensure that the needs of the patient are met.
Family, friends and the wider community also need to be involved and supported during and after the death of their loved one. And of course, the dignity of the person has to be at the forefront of everything that you do.
Best practice in palliative care is evolving, but it is widely acknowledged that a priority for care teams is effective communication, not just with the patient but also with each other.
Though it might seem difficult to find the time outside normal routines to address teamwork, Dr John Costello, a lecturer in palliative care and researcher for Macmillan Cancer Relief UK, believes this is really important.
By making the time to consider effective ways of working together, he says you “may become empowered to work more effectively as a team and for the benefit of the patient.”1
Palliative care is about supporting your patient right through the process of dying including their moment of death. This care is unique to each patient.
Part of palliative care is helping your patient to make a plan for their treatment so that even if they eventually become unable to communicate, you can do your best to ensure their wishes are respected.
It is difficult to predict exactly when a patient will die, or what death will be like for them.
If you are a nurse or family member taking part in the care of the patient, it’s likely that you’ll have a closer insight into the stages of your patient’s illness. As a result, you’ll probably be aware at some level of when death is close.
Getting to know your patients will help you to identify changes in their condition and be able to give them the best care possible.
Accompanying your patient by talking and listening to them throughout the whole process will bring them great consolation. Dr Kathryn Mannix, a palliative care consultant who has worked with dying people for 30 years, says:
“When I explain to a person who is getting ready to die what to expect, they are always so grateful. They relax.
“They often ask me to tell their family, because they know that the family is also expecting something much more frightening. And once a family all has the same understanding, then they can relax together. They know what to expect. They can deal with this. It is sad, but it isn’t frightening.”
Soon after he was appointed Bishop of East Anglia, Michael Evans (1951-2011) was diagnosed with advanced and aggressive prostate cancer. He nevertheless continued with his ministry for six years and as he neared the end of his life wrote:
“As I live now under the shadow of death, my prayer is very much that of St. Paul that I may know something of the power of Christ’s resurrection and a share in his sufferings, trusting that the Lord is with me. I pray that even now, I can joyfully witness something of the good news we are all called to proclaim.”