Speaking in a debate about euthanasia and palliative care on Yle last week, the director of Helsinki’s Terhokoti hospice, Juha Hänninen, called for more oversight to ensure that good quality end-of-life care is available to everyone, no matter where in the country they live. The discussion provoked a strong response on Yle’s comment pages, with many sharing their own and varied experiences of palliative care around the country.
Many commenters described experiences related to elderly relatives or victims of cancer, and said they had largely positive experiences of care in hospices or on long-term palliative care wards. But the experiences of those with relatives on general hospital wards were decidedly more negative.
”No doctors in sight”
One carer said the problem is often the staff’s lack of knowledge and fear of being present at the moment the patient passes away: ”It’s a shame that young, recently graduated nurses are the ones left to administer medication overnight to patients who are in extreme pain. Often patients die on primary care wards where no doctor has set foot in years.”
Commenter ”Tuulikki” expressed concern about a possible increase in palliative care at home, if that means patients in municipalities where resources are stretched are left to die at home alone: ”Terminal care at home is a beautiful idea for families with good links to outside care – perhaps with health professionals nearby or enough money to pay for good care. But where is the Health Minister going to find money to look after people who are dying at home?”
“Euthanasia in action”
“Nimimerkki” says they have seen hospitals cut hydration and nutrition to a elderly patients once they can no longer eat. “In practice this is euthanasia in action, though no-one dares to say so out loud. It begs the question of whether it wouldn’t be more humane to end someone’s life by administering some sort of drug.”
”Tiina” agrees – ”In my work nursing the elderly I’ve seen so much suffering and pain, and heard so many patients wish that God would take them. I wouldn’t allow any elderly patient to suffer a slow death like that, on average three whole days after liquids and nutrition are cut off.”
”Tiina” believes it’s ”extremely rare” that patients in Finland get the right palliative care.
A number of commenters said that close relatives have been refused strong pain killing drugs because of the possibility of addiction. “Where on earth is the sense in even worrying about addiction for people who have maybe only weeks left to live?” asks “MasaE”.
”Not enough resouces to take care of the dying”
“Pauliina” points out that the majority of patients die elsewhere than in hospices. “My mother died on a general ward, where there was no possibility of palliative care. While she was dying it was hard to adapt to the timetable of the ward, and to stay cheerful like people kept telling her to.”
“Pauliina” suggests that staff from different departments should have training that involves spending a week at a hospice.
”Sh” describes their father dying in pain in 2001 in Helsinki’s central hospital. ”Praying was the only pain medication available, and they couldn’t find where the pain was coming from. On the whole the care was so bad that my father called it a wasteland for the elderly.” Later, Sh’s father received good care and pain relief at the university hospital and Terhokoti hospice.
”Rude and inhumane,” is how ”La Verite” describes their mother’s end-of-life care in Lahti in 1996. The care given to their father in law in 2013 in a different department of the same hospital was ”like a different planet.”
The mother of ”Täti A” received good care in Lappeenranta ”When they stopped hydrating her, she was given lots of pain medication, good basic care and a peaceful room.”