Sixteen years ago, I sat in a meeting with physicians, social workers, and regional health care experts to discuss hospice use in the Finger Lakes Region. I recall Dr. Quill lamenting that imminently terminal patients are treated in Intensive Care Units, in place of the comfort care they really needed. Average admission to hospice care was about one week before death. Those involved in distributing health care resources in the Finger Lakes Region wanted to change that to improve patient care, support families, and better allocate health care dollars.
The docs in the meeting readily admitted they found it hard to broach the subject with patients and their families. Oncologists have less difficulty predicting when cancer death may occur, but physicians treating other diseases have difficulty estimating how many months their patients may have left. Clearly, this is an inexact estimate, and one many physicians felt unprepared to make, even though there is no penalty if their patients live longer than a few to six months.
“Hospice utilization patterns have not changed too much over many years and we still lament the fact that we get very ‘late’ referrals when the patient often only has days to maybe a week to live,” Dr. Thomas Caprio, Chief Medical Officer, UR Medicine Home Care & Hospice; Professor at the University of Rochester Medical Center, wrote to me in an email.
My husband’s primary care physician echoed the same reluctance to broach hospice to his patients because families tend to become upset, even though hospice care would be best for their loved one. I suspect the fact that their doctor is raising the issue confirms their worst fears, and that is painful. Doctors don’t enjoy inflicting pain.
Truth will set them free
People know when they are dying but too often cannot talk about it for fear of upsetting family members. Family members suspect their loved one is dying but cannot talk about it with the patient lest they upset him. Frequently, it is the non-family member or health care professional that can open communication about what the patient wants in his last days, and how the family can give him the comfort and support he craves.
Enter hospice care way before those last days. Hospice care does not cause death, but very often the comfort-care a patient receives helps them live longer, and so are recertified for another six months. Some people have been recertified so often, they “graduate” from hospice.
I hope these following facts about hospice from Dr. Caprio reassure you, and perhaps help you broach the subject to your loved one’s physician (who will probably be relieved you did).
From Dr. Caprio
- Hospice is for individuals who are terminally ill with a life expectancy estimated to be in the range of six months or less. It focuses on pain and symptom management, comfort goals of care, and supporting quality of life. The person receiving hospice care does not generally continue receiving treatments directed towards a disease—for example, chemotherapy for cancer is generally not continued with hospice. (Nor do they) return to the hospital unless symptoms cannot be managed at home.
- Traditionally, hospice is provided under the Medicare Hospital Benefit (MHB) as well as private insurances and Medicaid. They all follow a similar structure to Medicare and is a defined scope of services including hospice health care professionals (nurse, social worker, chaplain, physician), medications, and durable medical equipment (DME).
- Every patient has a choice of who their attending physician of record will be for hospice. This could be the primary care physician (PCP) , it can also be a nurse practitioner or physician assistant. Every hospice has a physician medical director as well as other employed hospice physicians that are available to provide consultations and recommendations on pain and symptom management and as a backup… For hospice specifically, a referral needs to come from a physician who is certifying the terminal prognosis of six months or less.
- A Do Not Resuscitate (DNR) order is not required for hospice care, but not having one is really inconsistent with the overarching philosophy and goals of hospice care. To attempt resuscitation on a patient who is terminally ill is rarely helpful and can cause more harm and suffering at the end of life for patients and families.
- For hospice care, there is not a home-bound requirement to receive services at home, unlike traditional skilled home care services.
Here is a link Dr. Caprio provided for you to UR Medicine Hospice: https://www.urmc.rochester.edu/home-care/hospice-care.aspx
I am indebted to Dr. Caprio for his generous response to my questions about Hospice, and I’m sure he shares my hope that you consider hospice, without dread, for your terminally ill loved one.