Despite an overwhelming preference to spend our final days at home, more than half of us will die in acute hospitals. Sylvia Thompson asks why our last wishes are not being met by the medical profession.
Recognising that someone is coming to the end of their days and providing an environment in which they can die with dignity is becoming a greater challenge in Irish hospitals. As palliative medicine goes from strength to strength, providing both hospice and home-care services for those dying of cancer, thousands of patients with other terminal illnesses wither away in busy, acute hospitals without staff prioritising either privacy or comfort for the dying person and/or their loved ones at the time.
Thoughtlessness and poor human contact between staff and relatives at the time of death can result in long-lasting and often unnecessary anger and bitterness towards the medical profession among grieving relatives.
Overlooking or delaying routine medical procedures, infrequently changing sheets and bedclothes and simply not showing human concern and respect for the dying person and their relatives is a complaint often targeted at busy medical personnel when individuals spend their dying days in an acute hospital.
Photographer Amelia Stein still feels saddened by the lack of thought shown towards her dying father, Mendel Stein, in one of Dublin's busiest acute hospitals over two years ago. It contrasted with the much more sensitive treatment of her dying mother in the Meath hospital some years previously.
"It does pain me that he died in a less dignified and private way than what I would have hoped for him. I got the feeling that [the medical team] weren't interested in what his life experience had been as a caring human being. The medical team did not even have time to tell me in private that he was dying. I was told this in the middle of a busy hospital corridor," she says.
Stein suggests that even with budgetary restraints, measures such as designated areas in casualty departments for the admission of elderly patients, a ward specifically for terminally ill people and care assistants who can liaise between families and medical staff would help enormously. That way there would be someone whose job it is to keep the patient and their loved ones informed in a sensitive manner about necessary medical procedures, hospital routines and answering any questions they may have.
"In hospitals, you can clearly see those who are close to death by the level of fear in their relatives' faces. Having someone available to talk to dying patients would be a great comfort to them and their relatives. I've seen lots of older women, for example retired nurses, with extraordinary communication skills who could do this job well," adds Stein.
"Acute hospitals - regardless of the patient's diagnosis - are not the best places to die in, and it is increasingly being recognised that the services of a hospice and home-care team should be available to all patients whatever their illness," says Dr Eoin Tiernan, consultant in palliative medicine at St Vincent's University Hospital, Dublin and Our Lady's Hospice, Harold's Cross.
Tiernan is one of the authors of a recent study on the preferred versus the actual place of death among patients referred to a palliative care home-care service. The study, reported in the Irish Medical Journal, found that more than 80 per cent of patients expressed a preference to die at home but less than 50 per cent of those patients actually did die at home. In Ireland, only about a quarter of patients with cancer die at home and figures for cancer deaths in Dublin (from the National Cancer Registry) show that the majority of deaths occurred in acute hospitals.
"Not every family will be able to cope with a relative dying from cancer at home and for a significant minority, the hospice is the best place but with increased support for families (such as care assistants and night sitters), more patients would be able to die at home," says Tiernan.
Relatives can also feel guilty if they feel they didn't do their best to provide the preferred dying place for their loved one. Monica Fitzgerald, counsellor with the Bereavement Counselling Service, says if someone feels angry about the way their loved one was treated in their dying days or the way they, as relatives, have been treated, it can prolong the grieving. "This is when people need support. A follow-up meeting with the hospital can be helpful in which they can ask for explanations. Sometimes, we also suggest that if grieving relatives nurse a personal grudge against a staff member, it is a good idea to put their thoughts and emotions down on paper and not send the letter. Sometimes, the emotions are there because they want the person back which is a perfectly normal grief reaction."
As the number of places available in hospices remains limited, it seems like a sensible option to support families more so that their loved ones can die at home, if that is their preferred option. Tiernan explains how a so-called intermediate level of palliative care is now being considered and in some places, put in place. This includes dedicated beds for terminally ill patients in community hospitals around the country, small community care units for older people (currently being evaluated in the Eastern Regional Health Authority) and dedicated beds in nursing homes with extra resources and staff training in palliative medicine.
Enabling patients to die in their place of choice is acknowledged government policy and providing more dignified surroundings than a busy ward in an acute hospital also makes good financial sense. "The problem is that the voluntary sector is providing a lot of these services at the moment and it is a challenge for the statutory services to take on these issues," says Tiernan.