The right way to go

Death is a taboo subject for many of us. But social care
professionals cannot afford to ignore it. Many clients may be more
vulnerable to a premature death than most people, and, of course,
those working with older people deal with death routinely.
Responding appropriately is essential.

So what does having a “good” death mean to the dying person and
their loved ones? What are the barriers to achieving a good death
and how can social care professionals help their clients achieve
it?

Kenneth Howse is a research fellow at the Oxford Institute of
Ageing. In a report entitled A Good Death, he identifies
three different views of the concept: a good death as a moral
requirement, as a gift of fortune and as an aim for
services.¹

The notion of a good death as a “moral requirement” recognises that
an individual’s desire for a certain kind of death is not just a
subjective want. Howse writes that it means those around the dying
person, be they professionals or loved ones, have a moral duty to
help the person achieve their goal of a good death.

A good death as a gift of fortune relates to the notion of someone
being “lucky” or “unlucky” in the manner of their death. Howse says
this reflects certain shared views about death, such as the desire
to die with family and friends rather than alone or for death to be
fast and painless.

The final concept Howse raises in the report is a good death as an
aim for services. If an aim is not specified for a service, it
becomes very hard to assess its effectiveness or guide and
influence how the service develops, he says.

But what exactly is a good death? Howse says despite the different
starting points, a good death contains three main elements: being
free from distress, receiving the care and support of family and
friends, and being prepared.

Help the Aged health and social care policy manager Jonathan Ellis
says for an older person a good death is where people are helped to
“die with dignity and a sense of completion, while retaining
autonomy”.

The desire to retain control, autonomy and choice is a powerful
motivator central to the lives of older people, he says. “Older
people have exactly the same legal and moral right to retain
control over their own lives and deaths as any other adult.”

Paula Jones, a recently retired director of Age Concern London,
agrees. She says a good death is one that is emotionally, mentally
and physically free of pain and distress for the individual.

The main barrier to achieving a good death, argues Jones, is other
people’s fear of confronting the fact an individual is dying. She
says: “They may fear death themselves, they may not want to accept
that a person close to them is dying or they might simply not know
how to open up the subject of the imminent death.

“Some people cope with dying by avoidance or denial. Painful as it
may be for the relatives, friends or carers with whom they don’t
ever discuss their dying, if it makes it easier for the dying
person so be it.”

Of course, achieving a good death is not something that is only
sought by those caring for older people. Maureen O’Sullivan is team
leader at the Sargent Cancer Care for Children unit at the Royal
Marsden hospital. She advocates controlling a child’s pain and
symptoms so they can enjoy a good quality of life for their
remaining time.

Not openly acknowledging that an individual is dying is also how
some families cope when their child is facing death, O’Sullivan
says. “The philosophy of our unit is to be as open and honest with
the child as possible but families are often very protective of
their children and can hold strong views about acknowledging the
reality of the situation with their child.”

George Casley is group leader of HIV charity Terrence Higgins
Trust’s buddy service, where volunteers support people with the
virus. He believes health and social care professionals can smooth
the process of a person’s death by being aware of their cultural
and religious needs as they approach death. He says: “For example,
Muslims have to be buried within 24 hours of dying and some Hindus
have to have a window open so their soul can leave the room.”

Exerting some control over the circumstance around a person’s death
– such as who they want at their bedside or where their funeral
will be held – can be positive for an individual and their loved
ones, according to Casley. Over the past eight years he has been
with 30 people as they died. “What is important is to enable people
to let go of worrying and this can be done by planning their
funeral or through a living will,” he says. “These are ways of
reflecting what is important to the person who is dying.”

One problem highlighted in A Good Death is the disparity
in the provision of specialist palliative care services (SPCS)
between cancer patients, who are often younger, and older people
dying from other causes.

The report says: “There is a tendency to think that elderly people
may have less need for some of the psychosocial components of SPCS,
whether because they are more accepting of death than people in
their fifties or sixties or because there is a high prevalence of
cognitive impairment in the age group.”

Ellis says giving people choice and control over the end of their
lives is “meaningless if the support and services to meet people’s
wishes are not available”.

What should social care professionals do to help their clients die
well? Howse says they should organise services so their clients
stay at home if they want to, making it easier for them to be
surrounded by their loved ones.

Listening to the child and their family and working with them to
ensure they feel comfortable is vital, says O’Sullivan. “Families
only get one go at this and it is important that is done in a way
that feels right to them.”

Casley says professionals have to allow themselves to be surprised
by and open to how different people deal with death. He says: “If
we allow this then we are acknowledging that we don’t know all the
answers and are experiencing something we have not gone through
ourselves.”

Some professionals have found that helping someone die positively
can be very rewarding. Jones says: “Doing the best we can for a
dying person is the last good thing we can do for them and what we
all want for ourselves.”

¹
A Good Death, The
Leveson Centre for the Study of Ageing, Spirituality and Social
Policy, 2003

“I never believed I would die…”   

…writes Mary, aged 36.  “I never thought that it would be me,
at my age. I never thought I would talk about it, feel it, know it.
I never believed that I would die. My HIV diagnosis was one part
surprise, one part loss. The knowledge that I am going to die is a
greater, more impenetrable, lonelier feeling. 

“Having a ‘buddy’ volunteer from the Terrence Higgins Trust who
asks the questions that need asking really helps. At first I
ignored him but when we discussed my living will it allowed me to
talk about the practicalities and to slide into my emotions.
Planning my funeral and the party afterwards with my buddy ended up
being great fun. He recognises aspects of my culture that are
important to me. At the party my guests are going to have goat
curry and will bring along their favourite dishes and music. My
buddy has encouraged me to talk to a few people and resolve some
festering hurts. He has also explained to the nurses what will be
important for my people when I die. 

“All the practicalities are laid to rest now – the will, the
living will and the funeral. Now I wait. Having massages organised
by the charity are relaxing, somehow they remind me that I am my
body too. 

“My loved ones and children are seeing Terrence Higgins Trust
counsellors and that makes me feel better. I see my buddy just to
chat and, increasingly, be silent. Whenever he leaves me he says,
‘Travel well.’  

“I hope I do.”

Principles of a good death  

Age Concern England has identified the following principles for
who are near death: 

• To understand what can be expected when death is coming. 
• To be able to retain control of what happens. 
• To be afforded dignity and privacy. 
• To have control over pain relief and other symptom
  control. 
• To have choice and control over where death occurs. 
• To have access to information and expertise of whatever kind is
  necessary. 
• To have access to any spiritual or emotional support
  required. 
• To have access to hospice care in any location, not only in
  hospital. 
• To have control over who else is present and shares the
  end. 
• To be able to issue advance directives which ensure wishes are
  respected. 
• To have time to say goodbye and control over other aspects of
  timing. 
• To be able to leave when it is time to go and not to have life
  prolonged pointlessly.