Have you ever heard about a "hospice?" If you have, have you ever heard about "in-home hospice?"

"Hospice", a personal perspective by Gerald Regnitter


In my experience, very few in our community have ever heard the term, much less considered the issues that surround hospice and hospice care. I do not claim any expertise, but over the past years I have had occasion to give it considerable thought, especially when, for a short time, I tried to provide hospice care in my home. But let's get back to some terms...

"Hospice" is usually used as an adjective to describe either a special place, outside of a hospital setting, that supports people as they are dying, or it refers to the kind of care provided to a person approaching death. More of us have heard about "palliative care"... usually in a hospital setting, and have come to understand that this is medical and other care which tries to make a person as comfortable as possible, manage pain and other needs, as a terminally ill person goes through the end stages of his or her life, but no longer attempts to halt or cure the condition.

As far as I am aware, Saskatchewan does not have any hospice facilities, and a terminally ill person has two options... to die in a hospital setting, or if it is possible and supported by family, to die at home with some degree of professional support for the dying person and the family. For many people dying at home is not an option. The home cannot support the special equipment that may be needed... there is no care giver (or no team of care givers) competent to provide the degree of personal care needed for the terminally ill person. The "family" that is there may be another elderly person who is physically incapable of the kind of effort needed to be the primary care-giver. In other situations, a spouse has pre-deceased the dying person, and any children either live far away or are too involved in their own struggles to live, to provide the major effort required to be the primary care giver.

For more and more people, there is no "family" in the traditional sense, or no one competent or willing to be the required care-giver. What happens? Well, very often the person who could be cared for in a home setting, instead occupies a VERY expensive bed in a hospital setting... and this is the MOST expensive option. While hospital staff are likely very caring and supportive of dying patients, they are very limited in the amount of time and attention they can give to any one patient. Think of the hospital environment... think about trying to spend time with a dying family member or friend... think about the alien environment and the inconveniences incurred in trying to spend time during the final months , weeks or days. Difficulties include hospital parking policies which make things very difficult for a long-term visitor. Difficulties can include having to travel a long distance for a visit. The result is that the dying person is usually alone, in a strange environment , and away from whatever support community there may be.

Is there another way? YES... The existence of a Hospice provides alternatives. This can be in a less formal setting, in a group home, with special support arrangements, and most critically, A TEAM of care givers that will include the physician, nursing support, pharmacy support, etc. It will provide for an "alternate home" for the dying person... a place where the support persons in his/her life can come, spend time, and even stay over in guest rooms or some similar accommodation.

Saskatchewan's population is low and wide-spread. Large cities in Canada and elsewhere have created hospice environments that work well. Larger cities even have been able to create special focus hospice environments, such as hospice for people dying of HIV / AIDS illnesses. In Saskatchewan this is largely impractical... there is just not enough on-going need for a special-focus hospice to justify the organization and costs of keeping it going all the time. Another problem is that if a few hospice facilities were created, they might be so far from the home of the dying person that distance would isolate them from the people who care and love him / her.

The thing we should be looking at, and it does exist elsewhere AND IN CANADA, is Hospice In Home support. This might be in a private home that will act as a receiving / boarding home for people needing this support. It could be primarily, a SUPPORT TEAM of professionals and volunteers who would go into the home of the dying person or into the home of a family member who can accommodate this, but who cannot act as the primary care-giver.

Several years back I found myself in the situation of being asked to provide a "home" for a young man dying of AIDS. I had been part of an AIDS Support Group, and had no personal fear of being infected, and found myself having to walk the talk. The young man had been designated as "palliative care" so he was eligible for full medication support, as well as some home-care nursing, and even occasional respite for me as the primary care-giver. It is a good thing that we do not know what awaits us when we agree to follow the dictates of our conscience...

As this young man's condition got worse and worse, I was not able to cope with the demands of the situation. A team of people, available on a 24-hour rotation, would have been required. Without going into details, after a few months, the young man could no longer stay in my home. Discussing the situation with others who had been support care-givers for another person with similar conditions brought on by AIDS, I found out just how demanding the scene became for a team of 4 persons. While this information supported me in my understanding that I had done as much as I could, it reinforced my growing conviction that there had to be a better way to care for our brothers and sisters who need help to die with a dignity and with the support they deserve.

We do not "earn" the right to such support... we have that right by the fact that we are fellow members of this human family.

Kathy Boate and Michael Curtis with Jeannette Browne researched and wrote a manual "Creating Hospice at Home for People Living with AIDS." I could give an address if anyone is interested in obtaining this manual. Contact me if you are interested in discussing this issue from any perspective. Gerald


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