My co-authors and I have interviewed over 300 participants about end-of-life choices. We consistently find misconceptions about what hospice entails. What are the common misconceptions you have come across in your research? Why/how do you think the false knowledge is disseminated?
It is interestingly complex construct to understand how does it disseminate across patients and families. The misconceptions range from not having any serious illness to finding cure in all possible ways. Reasons may include collusion within the doctor-patient-caregiver triad, cultural factors, unconscious psychological defences, Grief, decision making about treatment etc.
Thank you so much for your reply, Roshan. This is a great list. Can your clarify what you mean by collusion within the doctor-patient-caregiver triad? Fascinating stuff!
Collusion means secret agreement between doctor and patient or patient and caregiver or doctor and caregiver to keep secrecy about ongoing treatment or part of it. This works like a dual edged sword if not dealt properly by treating team. In one of the study more than 50% patients did not know that they are landed in palliation and its going to be end of life care. In fact no clear consensus had been established in a survey if doctor should inform the uninformed. I feel it is more in developing countries than developed one.
While I do not conduct research in this space, I have observed people not understanding that hospice care is for the family as well as the patient. There also seems to be limited understanding about the importance of receiving hospice care in the home. For example, if a person dies at home and they are not signed up for hospice care, then the police may be called. Whereas, if they were receiving hospice care, they will likely be able to avoid the trauma that might occur when police become involved. Thank you for your efforts on this important topic.
Roshan,
Wow, I had no idea. Thank you so much for pointing out an aspect of hospice care that was not even on my radar. I really appreciate it.
Leacey, thank you so much for your perspective. I guess I never thought of the police being called as opposed to a coroner being called (which would ultimately happen with hospice as well) - can you expand on your thoughts?
I would image this varies by where people are and what local laws require. In short, stories I have heard is that a person dies at home and the police are involved to investigate to ensure the person wasn't murdered and loved ones have to go through questioning. It would be interesting to know how frequently this actually happens.
When the Liverpool method is applied, you do not expect the staff to take away food and water, when you agreed to sign a paper that no artificial life-sustaining
treatment are needed. This is though the case in many places-I talk from Finland now- food and water are taken away and you are dead within a week.
Yes, people have been sitting by their parents and experienced without their permission that everything is taken away from the bed.
Thanks to both Beatrice and Tony for introducing me to the Liverpool method. I haven't come across it until now.
Most people believe you go to a hospice to die, which is just not the case. We discharge over 50% of admissions. People can be admitted for respite and symptom control, with the aim of getting them back home.
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