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Count on us to tell you

“What did the doctors in the emergency room tell you about your mother’s health?”  My words sliced into the silence of the room.  A few feet away lay an elderly woman in a makeshift bedroom – a room better suited for storage than as a sick-room.  Her small, frail body was neatly placed in the center of the twin bed by the Emergency Medical personnel just moments before.  Her eyes are closed and she appears to be asleep.  She just endured a hospital visit where she and her family spent several hours in the emergency room.  My colleague gently touches her arm and begins her nursing assessment.

“They said she was very sick and that there was nothing more they could do for her,” replied the woman’s daughter. “They told us you would come out and take care of her,” she added while the rest of the family looked on some wide-eyed, some just exhausted.  She was correct about what we were there to do.  My colleague and I work for Yolo Hospice.  We were in this family’s home because the mother was referred to us. Her medical team felt she was ready for hospice care.

Electing to access hospice care requires more than medical readiness. The patient or the individual acting as the patient’s medical decision maker and the patient’s family must understand and at least wish to try Yolo Hospice services.  All too often patients and families don’t really know what services Yolo Hospice provides.  While using hospice care has become more common and more people are aware of the service, their understanding of the care provided has not kept pace.  That was the case for this family.

“The doctors told you that your mother is eligible for hospice services, did they explain what kind of care hospice provides?”  The daughter looked at the other family members and back at me then down at the living room floor and sheepishly replied, “no.”  

Discussions around life-limiting illness are frequently cloaked in euphemisms, jargon or in a clinical, matter-of-fact manner that can create confusion or misunderstandings in the patient and family. These discussions happen because of our cultural discomfort around end-of-life issues that affect healthcare providers as well as those of us in the public.  Many of our healthcare professionals view death as a failure rather than an inevitable reality of life. 

But a frank and respectful discussion with patients about life limiting illness is essential to patient and family well being and that’s what you’ll get from Yolo Hospice. It doesn’t matter if you need hospice now or just want more information, you can get it from us. This is what we do everyday, and we strive to do it in a sensitive caring way while being clear about what to expect.

So an RN and I sat down with this woman and her family to talk to them about hospice services, listen to their concerns and give them honest answers to their questions.  We discussed the topic of end-of-life as it is -- an expected outcome rather than a failure of any kind. We encouraged expressions of emotions that are inevitable around death and dying. This is was not a ten minute conversation. On average, Yolo Hospice spends an hour with each new patient just talking about their hospice needs before hospice care officially starts.

Eventually, the woman’s family decided to choose Yolo Hospice care.  We gave them the tools and support needed to care for their mother, accept her impending death while utilizing what time they had together to create better memories.  We continued to work with the family after the mother’s death providing, bereavement services and emotional support as requested or on an on-going basis. 

While the family expressed thanks for our services I can’t help but wonder how much more we could have offered if we’d had the gift of time. The woman’s health didn’t suddenly take a turn for the worse.  Her health had been in decline for quite some time.  Our cultural discomfort with discussing death is responsible for more than misunderstandings. Many people do not receive the care they are entitled to from hospice because no one will discuss hospice until there are only days left, not the weeks or months before during which they could have been receiving support.

Everyday more and more people are empowering themselves through open discussions about how they want their end-of-life to be experienced.  Young doctors and nurses are being trained in end-of-life care as requirements for their degrees.  A conversation about hospice is a tough discussion to have, but have it now. We know you are strong enough. And Yolo Hospice will help.

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