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Krõõt Padrik: We cannot be last in hospice care and first in euthanasia

Krõõt Padrik.
Krõõt Padrik. Source: Private archive

The end of a serious illness is not a pretty process. It is certainly not a process that the bereaved or their loved ones should be able to manage at home. It is also not a process for which the main quick fix should be to exit life, writes Krõõt Padrik.

Recently, the topic of the legalization of euthanasia has resurfaced in the media, though initially in the context of end-of-life wishes. Toomas Uibo, the leader of the Eesti 200 group in the Riigikogu, has pointed out that before euthanasia is legalized, we need much better palliative care than is currently available in Estonia. Similar calls have been made repeatedly over the years, and time and again, doctors and politicians have concluded that the lack of systematic palliative care is an obstacle to the legalization of euthanasia.

Hospice care was only added to the list of health care services provided by the Estonian Health Insurance Fund in 2020, and by that time Estonia had been the only European Union country that did not fund hospice care for years. Even today, you can count the number of hospice units in Tallinn and Tartu on one hand.

Hospice is for people who have an advanced disease for which there is no cure. These include cancer in particular, but also many forms of lung, heart or kidney disease. The aim of hospice is to enable a person to live life to the fullest until death, and to leave with dignity and peace of mind.

I came face to face this year with the paucity of palliative and hospice care in Estonia, and the impossible situation for all parties affected. My aunt was diagnosed with rapidly progressing terminal cancer and in the summer the decision was made to stop treatment.

The only food and drink she could get at that time was through a feeding tube, and the situation was made particularly difficult by her type I diabetes, so the quantity and quality of the food she could get was crucial.

At the same time, dying, especially from a serious illness, is never a simple process. This is why hospice care is much more expensive than, for example, ordinary nursing care.

Hospice patients may need medical attention frequently, and their symptoms may change and deteriorate rapidly, that requires the physician to efficiently adapt treatment to match the patient's needs.

The treatment of the bereaved includes, of course, pain management, but also help for both the patient and family, practical counseling, stress release, and emotional and spiritual support. That is why it is a true collaborative effort involving caregivers, nurses, doctors, social workers, respiratory therapists, etc.

My aunt spent the last month of her life in the University of Tartu Hospital, which contributed to her peaceful and even beautiful passing.

Before that, however, she had been in another hospital in Estonia where things were radically different. In the nursing department of the small hospital, the 21-day limit was imposed with accountant-like precision, and it was implied that she has to go home (where she lived alone) or to a nursing home. The director of the hospital's own nursing home, however, confirmed that they do not have the facilities and skills to help a patient with terminal cancer.

In fact, there were no nurses there either, but the alternatives available to us at the time seemed even worse. We panicked and ran against the clock, contacting various nursing homes but even the most expensive options had neither places available nor facilities.

The memory of the whole experience is so unpleasant that to this day it is uncomfortable for me to even go near that small hospital. One can only imagine how much anxiety and stress this kind of ignorance and uncertainty creates for the bereaved. "I tried so hard to die today, but I didn't manage," the aunt there once sighed in despair.

The above description is not meant to vilify anyone, I just want to illustrate how alone and helpless a situation of a deceased person and their loved ones can be.

It was only by luck that we found out about hospice care, and even luckier that we got a place in Tartu, my hometown.

For some reason, no one in the small hospital even mentioned this possibility during the many discussions, although later no one seemed surprised by the possibility. My aunt's condition was so bad that I doubted she would survive the long trip. But she arrived and was beaming with joy: saved!

She spent her last month in Tartu. Looking back on how her health deteriorated in the weeks that followed, I hate to imagine how horrible it all might have looked if she were to die at home or shuffling between the nursing home and the emergency room.

Auntie's passing was supported by a whole team of professionals, from nurses, caregivers, and doctors to a respiratory nurse and surgeon. As the days passed, her health condition kept changing, and again, several people wondered how to make sure that my aunt could live to the end of her last days. My aunt's passing was dignified, peaceful, and cherished. None of us could have hoped for more. Our family is immensely grateful to the entire palliative care team at the University of Tartu Hospital.

The end of a serious illness and the decomposition of the body are not pretty processes. It is certainly not a process that the bereaved or their loved ones should be able to manage at home without preparation or knowledge. It is also not a process for which the main quick fix should be to exit life.

Proper professional guidance can save both those who are leaving and their loved ones a lot of undue dread, tension and misery. We cannot go down the path of euthanasia to avoid this suffering when dignified end-of-life care is not yet available.

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Editor: Kaupo Meiel, Kristina Kersa

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