Debate on how agencies can ensure people experience a ‘good death’

We asked people for their views on whether agencies are
sensitive to the preparations needed to ensure people experience a
‘good death’.

To read a recent Community Care article on the subject
click here

These are the responses we received:

“I was moved by this article and, from my
experience, feel that social care agencies understand these
issues.

More difficult I think for health care professionals – from the
experience of my mother who, from being completely independent, had
a stroke at 91, who said she would like to die, but whose life has
been prolonged artificially …Now almost 3 years later, she is
slowly physically ‘disappearing’, permanently in bed, turned every
few hours, still well-cared for physically in a nursing home, but
with little ability to understand where she is and what has
happened to her .. and no attempts earlier in her illness to meet
her therapeutic needs. Questions for health care, but not answers;
but maybe she should have been asked what she wanted whilst she
still understood the question.”

Helen Lewis

“On a good death. I absolutely agree that one
should be in charge of one’s death. However when a client is
unconscious or mentally unable to communicate this is when it
becomes “difficult” to ensure death is a good experience. At this
time family and professionals have to agree a plan, not always an
easy thing to do. Dignity and privacy are the utmost considerations
and, of course, being pain free….that is all one could hope for
oneself in that situation.”

Michelle Coleborn BA (Hons); R.G.N. R.M.N.
Qualified Care Manager
Elderly Mental Health team
Social Services
Gosport War Memorial Hospital

“I write as the parent of a child who died from
complications related to a chromosomal disorder.  Although not a
social worker, I have worked in a social care environment for many
years. 

It was clear from shortly after her birth that our daughter’s
life would be limited. From early in her life we sought support
from social work and the health service. My experience of social
work staff (hospital-based social worker and locally based home
care manager) was that they were unable to deal with my very real
need to enable my daughter to have ‘a good death’. The individuals
concerned appeared to need to hang on to a hope that our daughter
would somehow be ok when we knew that this was unrealistic. There
were times when I felt they viewed me as giving up on our child or
as being unnatural in some way. I sensed that staff were unable to
cope with their own sense of helplessness, and as a result I often
felt responsible for protecting them from the pain of our
situation. In contrast most of the health staff involved in
providing support to us seemed much more open to work with our
acceptance of our daughter’s limited life-span. It was health,
rather than social work, staff who encouraged us to use the
invaluable support and respite offered by a children’s hospice
(which was where our daughter later died).
 
The death of a child or young adult is something which inevitably
challenges us all – it turns upside down our expectations that we
will, as parents, be outlived by our children. In the case of life
limiting illness, it also denies us the ability to protect our
children from pain and suffering. I was not expecting anyone to
take away my pain as a new parent facing the death of my child, but
it would have been helpful to have had professional involvement
which would have acknowledged my need to make our daughter’s life
and her death as meaningful as possible.”

Anonymous