Supports for the Dying and Grieving: A look at Hospice through the lifespan and the benefits for those left behind when someone dies, support for widows, widowers, the childless, the siblings, and the orphans.
This is title to my dissertation but am seeking information from both sides the personal accounts or stories as well as the professional accounts or stories.
Do an internet library search using the key words from you question: "barriers to timely hospice referral" OR "bereavement services from hospice".
My bias is the physician (and I am a physician) is often the weak link in the patient/family, provider and process triad. The physician may be reluctant to bring up hospice for fear of appearing to "abandon" the patient/family. Perhaps he/she may think there is "nothing more to do"; actually, there is always something to do to alleviate suffering even in the presence of lack of cure. One of the key palliative care priniciples is to introduce palliative modalities early in the disease trajectory to assist clarification of treatment goals which allows patients and families to focus on the living rather than the dying. Bereavement is better when prepared. Yes, the process of early introduction of palliative principles is crucial; not just when they need hospice. It really is about living well--even as we acknowledge that life is limited.
The unit of care in palliative care is the patient and family too!
A valid aspect from The Netherlands: lack of knowledge about hospice care. May view a hopice as a place of death in stead of a place where optimal QOL is central in the last phase of life. Both the public and referring physicians (who often refer very late in the process) lack knowledge. Families often regret late referrals ("If I had known that this is what hospice care is all about, I would have opted for much earlier referral for my loved one.").
as a nurse focusing on this area in newborn intensive care, I agree too- the appearance of giving up, especially in a population where the unknowns are so great, that we continue high intensitty care instead of focusing on high care intensity and making the best of a short time. Often this leads to unrealistic hope for parents who desparately want survival, but at what cost. Thanks for talking about such an important topic.
Early referral is seen as giving up, even though the resources are focused on QOL- and I hope that we can see more transition to collaboration in QOL and palliation/active care on the same trajectory. It happens but should be happening more! Lori