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Over the last 50 years, the medical specialty of Palliative Care has become a critical part of the healthcare service landscape for people affected by serious illness 鈥� those medical conditions, like advanced cancer and end-stage lung, heart, liver, or kidney disease, that put people at high risk of dying and significantly strain their caregivers. Despite a large and growing body of evidence that suggests the benefits of palliative care to people across the entire trajectory of a serious illness 鈥� improved quality of life, less psychological distress, and even, in some cases, longer life 鈥� many people continue to associate palliative care only with care at the very end of life.
Many in this community are familiar with Balfour Mount, the urologic surgeon at 91社区 who coined the term Palliative Care in the late 1970s. Many fewer are aware of the physician whose work inspired Dr. Mount. 听was a nursing and social-work trained physician from the UK who founded the first modern hospice 鈥� , south of London - and whose ideas form the bedrock of our understanding of suffering in the setting of serious illness.
Dame Cicely, as she was known, died in 2005. As a , and the Kappy and Eric M. Flanders Chair of Palliative Care at 91社区, I am inspired by her ideas and wisdom. I would have loved to have met her. Using a designed to create opportunities to converse with different historical and fictional characters, I set out to have a conversation about palliative care with her. I was struck by the cogency with which this AI agent explained many of the issues that we contend with daily in seeking and providing care in the context of serious illness.
Hearing from Dame Cicely 鈥� or in the internet鈥檚 version of her 鈥� presents an important opportunity for public education about the philosophies and benefits of palliative care. While I have changed the order of questions in our conversation, the agent鈥檚 responses are unedited.
Dr. Justin Sanders (JS): What is Palliative Care?
Cicely Saunders.ai (CS.ai): Palliative care is about relieving the symptoms of a serious illness. It鈥檚 about making life easier and more comfortable. It can happen at any stage of an illness, and it can continue even when a person has made the decision to die. It鈥檚 about helping a person be at peace with the circumstances around them - including their mortality - and it tries to find ways to make the final days as comforting as possible.I founded St Christopher鈥檚 Hospice in 1967 to allow people with terminal illnesses to be cared for in a more dignified and comfortable environment.
JS: Who should receive palliative care?
CS.ai: I would like to see every patient get palliative care. Not just for the dying, but for anyone who is facing a serious illness or injury and may not recover completely. I think we have a lot to learn about how to help people who are suffering from long-term pain, fatigue and depression. We shouldn鈥檛 leave it for months or years until someone is about to die before we intervene. That seems cruel and inhumane to me.
JS: What do you say to someone who is likely to die but doesn鈥檛 feel ready to stop pursuing treatments to prevent death, even if they are not likely to work?
CS.ai: I think we have to remember that death can be a terrifying experience. It鈥檚 natural to want to cling on to life, even if the odds are not in our favour. I know that we are all taught that we should fight until the end, but I think in situations like this we may need to think beyond ourselves. Does the treatment have any chance of working? Would it involve a good quality of life if we survive? We must try to imagine what life would be like for us - and for our families - if the treatment fails.
JS: What do you think is most wrong about how we care for the dying?
CS.ai: We put a lot of effort into prolonging life, but very little into making the journey more dignified and fulfilling. When people hear the word 鈥榟ospice鈥� they tend to think that it鈥檚 for people who are ready to die. But most of the patients who come to us are in the stages of the illness where they could be helped to survive for another 6 or 8 months - but we have learned from our patients and their families that they would rather just be allowed to die. They鈥檙e tired of fighting.
JS: Can you explain the concept of 鈥渢otal pain鈥�?
CS.ai: When we think of pain, we tend to focus on the pain in the body, but for people with terminal illness, they are also dealing with anxiety, emotional pain, the fear of dying, of leaving family behind, financial worries and so on. So 鈥榯otal pain鈥� includes all of these factors. At St Christopher鈥檚 we try to work with patients and their families at all stages of an illness to make sure that all aspects of the suffering are understood and that we try to provide help for all of it, not just the immediate physical pain.
JS: How do you think about healing in the context of serious illness?
CS.ai: I take a broader view of healing than most people. I think that some people are so fixated on achieving physical healing that they miss the opportunity to have spiritual or emotional healing. We should give people the chance to work on any of the aspects of their suffering that we can help them to change. Some people just want to feel the warmth of family around them, some people just want to have one last conversation with someone they love. If we can make that possible, then that鈥檚 healing - even if we can鈥檛 do anything to improve their physical condition.
JS: Any final thoughts?
CS.ai: Yes. If you are ever faced with a serious illness, please don鈥檛 be afraid to ask your doctors about palliative care - before it鈥檚 too late. You can never tell how much time you have but you should know what鈥檚 on offer to you.
JS: I would add to 鈥淒ame Cicely鈥檚鈥� reply that a large and growing body of evidence supports the assertion that if one has a serious illness and they are not accessing palliative care, they are not getting the best possible healthcare. Period.