Not Satisfied with Hospice Care

QUESTION: We are having a terrible time with hospice nurses and compassion here where we live. My daughter is suffering and taking care of her dad (who is dying). There is a lack of compassion and very medical instructions (not for the layperson). I am a nurse in California and also a hospice nurse of many years ago. I cannot understand the mechanical approach of this process.

I received your email to my website this morning. I am sorry to hear of the lack of "hospice" care your daughter and her father are receiving. There are hospices who provide excellent end of life care and then there are agencies that operate under the name "hospice" but are really just providing home health care. Unfortunately, most of the public don’t know the difference between the two - hence the negative reputation of some affects all.

I have been in the hospice arena for over thirty years. Hospice care during this time has become more and more medical as the hospice concept has become absorbed into the medical model. The term medical model refers to the manner in which hospitals, and health care in general, operates. This is indeed unfortunate as dying is not a medical event, it is a social, communal event. The tools for end of life care are, as you mentioned, compassion, support and guidance, not necessarily drugs and procedures delivered in what we consider an impersonal medical manner.

When hospice began in the 1970’s it offered care for people at the end of their lives, care that was not being given in hospitals or nursing facilities. Hospice offered supportive care in a person’s home. Not just physical care but emotional and spiritual support for the patient and their families/significant others. Because this method of caring was not being done in hospitals or nursing facilities it was considered “outside the medical model.”

By the time Medicare created the Hospice Medicare Benefit health care agencies and hospitals began creating their own hospices and people who understood and originated from the medical model started managing hospices. They brought with them medical ideas and medical practices that are not necessarily in tune with the hospice end of life concept. Gradually, ever so gradually, end of life care given by a large majority of hospices has become more medically oriented, using more medical terminology, giving more medical procedures. For us “old time” hospice people this trend is frustrating. To us it is not what hospice is about. It is not true to the original hospice philosophy of quality of end of life support for patients and families.

So what can people do to insure they are receiving “quality of life” care instead of a more medically oriented approach to end of life? Shop hospices. I know that when we need hospice services we are stressed, confused, and sad, basically an emotional wreck, so you might be wondering how can we research? What do we look for? Make a few phone calls, ask a few questions.

Question: “Will we have the same nurse and bath aide taking care of us?”
The reason you want consistency is because it is important to develop a trust and a bond.

Question: “Does being ‘on call’ 24/7 mean you will come to my house day or night if I feel you need to come?”
Most hospitalizations for people on hospice are the result of a family being afraid and not supported in caring for their loved one at home.

Question: “If you have an inpatient facility does that mean my loved one can stay there until the end of their life or is it just for symptom control and a limited number of days?”
Most inpatient hospice facilities are now only used for symptom control.

Question: “Will you do an initial visit on Friday at 4:00 or Saturday or Sunday?”
When working with approaching end of life, time is the enemy. Hospice care is not just nine to five, Monday through Friday.

If you don’t like the responses or feel your questions are not being answered in a caring, understanding way, call another hospice. Listen to your heart when talking to the hospice representative. Is this the kind of person you feel confident in, comfortable with, someone who seems nurturing? Those are the qualities you are looking for. You are looking for more of a personal and less of a medical approach. I am not implying that medical knowledge and expertise is not important because it is very important but you want both (medical expertise and compassion) to care for your loved one and your family.

If you were buying an major piece of furniture for your home you would “shop” before you buy. Yet we will accept a hospice on the suggestion of a case manger, social worker or other hospital employee who is basically a stranger to us. Our medical model expects us to accept medical recommendations basically without question. I’m suggesting when we “step outside the box” of what is expected and do a little research, we can find the quality we are looking for.

If you have a hospice that you are dissatisfied with talk with the administrator about your concerns. If that does not produce satisfactory results interview a different hospice. Medicare has made provisions for changing hospices. Find a hospice that will meet your needs, tell the current one you are changing and they are required to set the wheels in motion.