What Does Palliative Care Mean | A Daughter’s Last Decision
What Does Palliative Care Mean?
The World Health Organisation says that Palliative Care, by definition, means
Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.
But the question about what does palliative care means is different for every person dealing with a terminal illness. Decisions about their end-of-life care are difficult but incredibly important for both the person who is going through the illness as well as their family. Recently, I was at the playground with my boys having a run around and swinging off everything in site, I had the opportunity to answer this question of “what does palliative care mean” to one particular person.
The boys continued to play but eventually they eventually joined in with me. A lady started talking to my son about jumping like a frog. I chatted with her and asked if she had any children. That was the start of a very disturbing and sad story about her 36 year old daughter.
Joan explained how her daughter was diagnosed with pancreatic cancer three years ago. The sadness and anger in Joan’s eyes was very obvious but I didn’t know why. Joan’s daughter was married and had a 2-year-old daughter at the time. She was treated for pancreatic cancer in a large hospital, where she was having regular observations and blood tests taken with no chance of any further treatment towards a cure. Joan’s daughter was terminally ill and now looking for the best quality of life to have with her young family before she died.
Joan and her daughter had a meeting with all the medical and allied staff caring for her at hospital. Joan and her daughter had been cared for by a team of health professionals in hospitals and was surprised that the only nurse present in the meeting about her palliative care had not been involved in her care at all. This was worrying to Joan because this nurse never knew her daughter.
During this meeting, tthe doctor informed them that he anticipated that Joan’s daughter had approximately 3 months to live.
Joan’s daughter decided to be admitted to a palliative care unit for the remaining time left of her life.
WHO describe a number of principles that underpin palliative care, including:
- provides relief from pain and other distressing symptoms;
- affirms life and regards dying as a normal process;
- intends neither to hasten or postpone death;
- integrates the psychological and spiritual aspects of patient care;
- offers a support system to help patients live as actively as possible until death;
- offers a support system to help the family cope during the patients illness and in their own bereavement;
- uses a team approach to address the needs of patients and their families, including bereavement counselling, if indicated;
- will enhance quality of life, and may also positively influence the course of illness;
- is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications.
Palliative care can be delivered in a variety of settings. But Joan’s daughter had very distinct reasons for choosing to remain at home. Her reason was her 2-year-old daughter. She wanted to spend more time with her in a homely environment and make the most of their time together.
End of Life Care
Tears welled up in Joan’s eyes as she recounted how her experience with her daughter’s end of life care was vastly differently to what she had hoped for.
This family’s care was not well planned or well executed. The benefit that a palliative care team can offer, even if it is delivered at home, is meeting the needs of the individual. Joan hoped that her daughter would be comfortable and her physical and her psychological needs met so that her quality of life was as good as it could be. But that wasn’t to be.
Joan had to do the mouth cares by herself. Her daughter’s lips parched and stuck together like glue. Her daughter struggled to eat. Pancreatic cancer can be very painful and especially if it grows in other parts of the abdomen. Joan’s daughter had cancer in the bile duct, which caused huge amounts of pain needing extra pain relief medication. She had a morphine pump as well as extra morphine when the pain was unbearable.
Joan said when the pain hit, Joan’s husband would take his granddaughter out of the room so she didn’t witness her mum’s pain. Joan would stay and support her daughter through those tough times.
Managing pain can be very tricky and needs constant monitoring. Pain management is a major part of providing the best quality of life so someone with cancer can live, not just exist, in the limited time they have with loved ones.
Joan’s daughter’s care caused a lot of pain and hardship for her and her family. They only had one chance at getting the best out of every drop left in her life . It was stolen away by poor personal care. There was nothing fancy to do but give the best quality of care so Joan and her family could cherish this time together.
Joan’s daughter died not 3 months later as predicted by her health care team. She died within 4 days.
Joan will always wonder about the what if’s.
Three years on and Joan cares for her granddaughter 5 days a week so her son-in-law can still work and provide for his little girl. For me, the sad part of Joan’s story is not being able to celebrate her daughters life, rather be stuck in the tar of resentment for her daughter’s poor care. Palliative care that is well co-ordinated means a great deal to those who live through this experience. The earliest possible point in the case that palliative care can intervene the better – it’s all about quality of life. When people ask me “What does palliative care mean”, then my answer is always about gaining the most quality of life possible. That needs to happen through co-ordinated care. There are a team of people with unique skills who contribute to this. But quality of life is central to palliative care.
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