Question: I just heard a very dear friend of mine has been “put on Hospice.” What does that mean? Will she have to stay in the hospital forever?

Answer: First let me define ‘Hospice.’ This is taken from Webster’s Dictionary (yes, I keep the printed version in my office); “a facility or program designed to provide a caring environment for supplying the physical and emotional needs of the terminally ill.”

So the Hospice definition is laying out the very broad ground rules for the care provided to your friend. Hospice in my words is a philosophy of care. Hospice is also a benefit provided by our Health Insurance. In your friend’s situation the type of Health Insurance they have does not matter, you are asking about their situation or status.

In the definition provided by Webster’s Dictionary, the part that scares all of us is “the terminally ill.” Terminally ill means this individual and their doctors believe that they are close to death.

To qualify for Hospice Benefits an individual has an expected life of less than six months. That is the part that most of us are intimidated by. The idea of ‘knowing’ when you are going to die, and that it will most likely be soon is scary.

To that I would say to you, reach out to your friend. Go see them, call them, touch them in some way, so that they know you are available if they need anything. This will let them know that you care about them and are thinking of them. Don’t avoid them. This is your opportunity to express to them through your actions how important they are to you and to the world at large.

Now I will talk about Hospice as I have come to understand it.

In each region of the Country, Hospice is a little different. This is because in each County or area of the Country, a different organization(s) are available to provide for this Hospice benefit/service. In Chautauqua County that agency is Chautauqua Hospice & Palliative Care. You may remember that name from last week when I talked about Palliative Care. (In Cattaraugus County that agency is Home Care & Hospice.) Since you and your friend live in Chautauqua County this article will be speaking to that agency.

The Hospice model is meant to provide/direct care and services for those with less than six months of expected life as I stated earlier. This means that the goal is comfort, dignity and support to cope with your end of life situation.

Last week when we talked about Palliative Care that was slightly different. Palliative is about gaining control of unmanaged symptoms and may accompany curative treatment.

Hospice Care is about quality of life after curative treatment does not offer hope. Hospice is about making sure that your remaining life is all you want it to be and that you have had the opportunity to finish those things that are really important. In speaking with the Hospice staff at Chautauqua Hospice & Palliative Care, they used the phrases; “We are the final reward”, or “The end of life Gold Standard”. I liked those phrases because it gives you some idea of how passionate they are about making their clients and their caregivers lives better.

I have dealt with Hospice many times over the years and I always come away feeling better about my life and the people in it. I sometimes think that we should all live our lives a little closer to the end. What I mean by that statement is that we need to value TODAY for the day we have. What would make today better? What could improve my life TODAY? Set that as the goal, not in a selfish way, but in the world a better place way. That is what Hospice does every day!

The Hospice service model is about providing a team of experts available to your friend and the family in coping with this new found information that death is closer than we may be ready to believe.

This team is led by Dr. Putnam the Medical Director, or a Hospice Physician. The physician will be directing your friend’s care and treatment. In some situations, a patient’s primary care doctor stays very involved; in others the primary care physician steps to the side. The team that Dr. Putnam directs includes, nurses, aides, social workers, chaplains, volunteers, and physical, occupational & speech therapists. If appropriate, pet therapy, art enrichment, music therapy & massage are also available. This team also obviously includes your friend, their family and the support systems they already have in their life.

Hospice goals are the goals of your friend. What do they want their remaining days to look like? Very often we are not comfortable or able to talk about this topic without help. Hospice staff will also help with that process. Communication is so important between your friend and those around them. This communication is an important part of the healing process. The loss of someone we love is never easy. The bereavement support provided by Hospice actually starts before the individual has died. That support continues after death as well for those that are left behind.

The overall goal of Hospice is for comfort care and quality of life. Most of us are somewhat afraid of death, afraid to talk about death. I hope I am not the first to tell you we ALL die. Hospice is about helping us adjust to that reality.

My only frustration in thinking about the Hospice Programs is that so few individuals use this service. The Hospice staff gave me some interesting statistics. One which really struck me was that only 30 percent of the individuals who are eligible for Hospice Benefit in Chautauqua County actually use it. This means that many individuals and families are trying to do this without the robust and compassionate support of Hospice and I feel badly for them.

Another unhappy fact is that many individuals only receive Hospice support services for 7 days or less. That means they waited too long to get in touch with Hospice. Sometimes it is because we are afraid to talk about death, or that our doctor’s aren’t able to talk about this benefit. It is hard for the Medical field to say “Okay no more treatment.” For many that is considered failure. I disagree. As I said earlier, we all will die someday. That doesn’t mean we should ignore our medical conditions, but we can say “no more”.

The last part of your question was “Will she have to stay in the Hospital?” This is also a great question. If your friend accepts Hospice services those services can be used wherever she is. Chautauqua Hospice & Palliative Care can provide services in all the area Hospitals, Skilled Nursing Facilities and most Adult Homes/Assisted Living Facilities, in our region. Those services are usually provided in an individual’s home or the home of their family or friend. Most people do not want to spend their last days in a hospital. The location of your friend does not matter. The type of services will be adjusted based on where she is and what she needs. However, there are certain requirements that need to be met for inpatient Hospice care.

I also want to remind you that your friend may not die in the way that is expected & planned for. When patients are comfortable and happy in their home, they sometimes thrive. Occasionally a patient “graduates” from Hospice. That means that their symptoms or illness improves and they are no longer appropriate for that definition of less than six months of expected life.

I do want to say “thank you” for asking this question. Many people are afraid to talk about this topic. I am thrilled to have the opportunity to answer some of your questions. There is so much more I could say about Hospice. I do want to remind you that if you have further questions you can always reach out to Chautauqua Hospice & Palliative Care. They can be reached at 338-0033 or at www.CHPC.care. Their staff is available every day to talk with you about their services. Anyone can initiate a request for Hospice. If you feel that someone you know or love could benefit from these services, call Hospice and talk with their staff. If ever I have a question about a case or client, I call or reach out to the Hospice staff. That way I know I am getting correct answers to my questions and concerns.

To contact Janell Sluga, GCMC directly call her office at 720-9797 or email her at janells@lutheran-jamestown.org.