It is a pattern oft repeated in a lifetime:

You go to the doctor’s office, get a prescription, and go home.

You go to the urgent clinic, get care, and go home.

You go the hospital, get better, and go home.

But some people are very surprised when they go to inpatient hospice, are stabilized and told to go home.

Inpatient hospice could be within a hospital, nursing home, or a dedicated hospice facility. The inpatient unit could be non-profit or for profit. A stand-alone inpatient hospice facility fully embraces a palliative care philosophy. Those hospice units embedded in a traditional setting do their best to adhere comfort care albeit with the majority of staff trained in a curative model.

Any of these inpatient hospice settings can lead to a can lead to the “hospice turn-around.” The patient can become much improved due to excellent control of pain in a palliative care setting. The patient is then transferred out of inpatient to continue hospice care in the family home.

This transition can be very challenging.  The family home may not be easy to navigate as a hospice patient. The home setting has to serve the purposes of the living and the dying. The chaotic activity of a lively home can make it hard to rest. The stream of visitors and phone calls do not have the filter of a front desk dedicated toward making sure the patient rests as she or he desires.

It is very important for a family member to advocate for the hospice patient during the transition to home hospice. The inpatient facility will coordinate the delivery of needed care supplies for the family member. Much of the cost of these supplies will be covered by insurance or Medicare.  Some non-profit hospices will cover the cost of any remaining materials not covered by other payers. The family member will oversee the creation of hospice space in a room most appropriate for the patient. This will usually consist of a hospital bed, bedside tray table, oxygen tank, and morphine pump.  The facility will also supply a small comfort kit with addition medicines and narcotics.

The family member will also have to advocate for the family. When my husband came home for hospice care, we had a ten-year-old and a three-year-old in the house. We were told to place the comfort kit in the fridge. I was astounded. There wasn’t a lock on the kit, and it was filled with dangerous drugs. I asked the hospice nurse, “Does it have to be kept in the fridge? The nurse replied, “No. We just tell families that, as it is a uniform place for our staff the find it on calls.” Every family is unique, and the balance between the needs of the other family members and the needs of the hospice patient must be balanced.

Remember hospice volunteers want to help ease this transition in care. Most non-profit hospices have a cadre of volunteers waiting to help a family during this challenging time. Some volunteers will read to the patient, sit with them, and pick up groceries. Some volunteers have been trained to help do a body lift and aid in hygiene tasks.  This is a very important resource for the family advocate and the patient. There is no need to be struggling alone at this very hard time in your life.

Regina Holliday is a patient advocate and can be reached on Twitter @ReginaHolliday.  This article originally appeared in Engaging the Patient.

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