Hospice care isn't what you think

Most people equate the term “hospice” with imminent death.  It may conjure up visions of a Dr. Death and his nurses coming to lead your loved one out of this world to the next.  But these days, hospice care is so much more and does not necessarily mean that death is around the corner, or even six months away.

Paid for by Medicare, hospice has expanded their services to people with serious/chronic illness who have experienced a decline in their condition which could bring them closer to death within six months or so; but often the patient will stabilize or the decline will be more of a bump in the road from which the patient recovers.

My husband has a progressive neurodegenerative illness; he is basically healthy, but his brain is severely impaired.  I called hospice a few months ago, on the advice of a friend in a similar situation, because I realized he was eating less and getting thinner.

I had called his neurologist and primary care doctor for advice; neither returned my call, so I called the local hospice organization and asked if they could help me.  They said yes, sent a nurse to our house that same day, and enrolled my husband in their wonderful program.  They did not need a referral from my husband’s doctor; but rather they informed his primary care doctor that they were now involved.

We have a visiting nurse every week to take my husband’s vital signs (blood pressure, listen to lungs, etc.); a doctor who made an initial visit and will come about every six weeks or if needed, sooner; and a social worker to address my needs as a caregiver.  They also have chaplains available for people who request them.  They offer care equipment (walkers, hospital beds, etc.)  and 24-hour availability over the phone to answer questions – and, unlike many doctors, they DO answer the phone and help you through the problem.  Their goal is to keep the ill person from having to go to the emergency room, if possible, saying that most emergency room visits can be prevented with their help.

Dispelling another common myth about hospice, the patient CAN still use his/her own doctors while under hospice care.  Hospice may even pay for some medications that the patient is currently taking.

Although I don’t feel my husband is in imminent danger of death, we can be in the hospice program because of his eating problems.  The doctor and nurse have explained to me the causes for the eating problems and how the ill body eventually shuts down.  Every three months, the hospice team reevaluates the situation – if things improve or if there is no further decline, they take you out of the program, but you can re-enroll again if the patient declines again.

After years of struggling on my own with my husband’s illness, coordinating his many doctors and having to devise my own care plan for the most part, it is so comforting to have the hospice support.  They are wonderful, caring professionals who give the patient and caregiver the attention that is rarely gotten from doctors.  They never rush, spending even an hour at your home speaking with you.  For however long they will work with us, I feel like a lot of pressure has been lifted from my very tired shoulders; and I am very comforted to know they can be with us when the end of life comes.