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.
Now
“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.
https://www.urmc.rochester.edu/people/23094529-thomas-v-caprio
Sadly, when I worked in the MICU, I saw this a lot. Physicians really need to bring up end of life decision making before a crisis occurs, despite the anger and pain it may cause, with the entire family. I’m thrilled to see things are changing somewhat.
Ironically, at that meeting I attended, I suggested that since the docs were uncomfortable broaching the subject, perhaps they should hire a social worker who could. The suggestion was literally brushed away. The moderator waved his hand in the air. I turned to the social worker sitting next to me and asked what was wrong with my suggestion. She shook her head and said, “nothing.” Perhaps families need nurses or social workers to empower them to say “enough is enough,” and leave it to God and not ICUs!
My husband Bob was finally admitted to Hospice care five days prior to his death. The relief – for him and me- was substantial as his admission allowed us to take in the DME, such as a hospital bed, which had been out of reach for the previous months. He was able to pass peacefully in our family room viewing his beloved Onondaga Lake. Being able to depend upon the nurses and home health sides at that time was a gift from God.
What a relief for you and Bob! What a shame that the system (in which you work!) is so dysfunctional that you only accessed hospice a week before Bob’s passing. You should have been made aware of hospice months before. The DME (durable medical equipment) should have been in place long before his death. We need to get the word out, fellow RN and friend.
My wife and I visited Madelon in the nursing home every Sunday for over eight years. She had gone there initially for hospice care but had improved and entered long term care. Later, she would be put on hospice care again. In fact, she was on hospice care a total of five times! Each time with hospice workers visiting her and giving her their loving care — personal care like nails and hair, visiting with quality listening time, and in general just “loving on her” — with this quality of care, Madelon would improve and no longer qualify for hospice services. She was our “energizer bunny” friend who loved our weekly times of sharing and mini-church services right there in her room. This experience showed us that hospice has a very real impact on the life and well-being of the person receiving such care. We are grateful for this time of walking with a precious saint while she gave the last yers of her life sharing her joy with everyone around her. And we really appreciate how hospice care can be the blessing that makes living your last days more joyful and fulfilling.
Thanks for sharing, Jerry. That kind of loving care should not be limited only to hospice!