What is Palliative Care?
Palliative care is often misunderstood as ‘doing nothing’. The exact opposite is the reality:what palliative care focuses on is not cure, but comfort in all aspects of life:
- Physical
- Mental
- Emotional
- Spiritual
- Social
- Existential
What palliative doesn’t mean:
- You’ve given up hope of a cure
- You’re a lost cause
- You’re going to be ‘left to die’
- Nobody cares about you
When does Palliative Care Start?
End of life can be a long process – years in some cases. Palliative care can be considered as early as time of diagnosis of a chronic or terminal condition. World War II Veteran Jim Cooper lived for six years, whilst under palliative care
Jim was living with advanced lung disease (COPD) and heart disease. Jim expected to die sooner rather than later when he checked himself into Stanford’s out-patient Palliative Program. Instead, he lived for 6 more years – during which time he married the mother of his one child – ensuring she received his Veteran’s Benefits – and was able to get emotional relief sharing an experience that had burdened him for decades: witnessing the violent death of a young child he planned to adopt.
How is Hospice different than Palliative Care?
Where Palliative Care can be a component of care from time of diagnosis the focus of Hospice is end of life, incorporating palliative care. Hospice takes care of both patient and family – to help make the final journey as free of suffering as possible and as full as possible of the things that bring joy
Hospice Stories:
‘Hospice was called. The team asked the children what their father enjoyed. They talked about how he loved to relax at night with a beer and pretzels, watching TV, his dog at his side.With the blessings of the hospice team and the director of the alternate home, the family rushed out to buy beer and pretzels and pick up the dog. During is final days, he was able to enjoy his beer and pretzels, his dog, and his family gathered around him’
‘Having hospice with us was comforting. We were lucky in that my siblings and I were all there for my parents, but we weren’t on the same page at times. Having someone we could trust from the outside and assure us that the decisions we were making were OK was a huge help.’
‘She had some problems with memory, and didn’t really remember what had taken place the day before, but she was able to say how much she missed her family and how she experiences loneliness much of the time. She talked about taking the days in stride though, and working at not feeling sorry for herself. She said, “Just before I dozed off, I was beginning to sit and start feeling sorry for myself and then you came along and now we’re having a wonderful time.” ‘
‘In that moment as we laughed and shared the time it takes to have a cup of coffee with one another, we agreed how quickly our perspective can change in a moment, how quickly we can influence someone else’s perspective of their situation, by simply taking a moment to share a positive word, a smile, a listening ear, or a gentle touch.’
And this:
“(in the hospital) nurses noticed flecks of blood when she vomited, which sometimes signals internal bleeding. The normal procedure would have involved a naso-gastric tube (something Dr. Lee had tried on himself as a medical student and found intensely uncomfortable), then sedation and insertion of a second tube through her esophagus, into her small intestine. “But they didn’t do it,” Dr. Lee explained, with relief, “because she was under the care of a hospice.”
Instead, he took his mother home. Over the next four weeks, Pathways Hospice sent nurses, social workers, aides and a chaplain to her residence. … Mrs. Lee recovered her mental clarity, ate and slept better, regained strength.
“Invoking hospice allowed me and my sister to relax and have some confidence that the care she was getting was what she needed,” new old age:discovered-the-magic-word
When you complete your Advance Directives, using a planning tool such as BestEndings, you can indicate you want Palliative and/or Hospice Care.
Interesting Reading: Dr Daphna Grossman: In Palliative care, doing ‘nothing’ is not an option
What does Allow Natural Death mean?