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