Eve Karmo: Death with Dignity Is What Matters

12. October 2015

It is vital to provide the elderly with the support needed and the opportunity to maintain their dignity until the end of their days, says Eva Karmo, Director of the Long-Term Nursing Clinic of East Tallinn Central Hospital.

It is a universally held view that dignity is an important part of our daily lives. However, we often tend to lose sight of this simple truth in our dealings with the elderly. And this is regrettable. Even close family members are often unable to understand what is wrong with old people. Why do they often become pesky as years pass by, take out their old grudges on their close ones and behave strangely, at times even dangerously?

It is hard for us to comprehend that these beloved and dignified people are simply suffering from an illness. First and foremost, from one which affects their mental abilities. An illness should not be confused for maliciousness, but this happens more often than we realise. It is essential to recognise each person for what they have achieved during their lifetime. This is our duty. It is vital to provide the elderly with the support needed and the opportunity to maintain their dignity until the end of their days.

Such assistance should be offered in a way that would make accepting it easy for those who are advanced in years and with failing health. This should not be done condescendingly or inconsiderately. While terminally ill persons may have a limited life expectancy, their impending death does not detract from the value of their life.

It is a sad reality that in Estonia the long-term care delivery system for the sick is still virtually non-existent. Luckily, nursing care is gradually developing, but the demand for the service significantly exceeds the financial ability to pay for it. It seems that there is no vision regarding situations in which people require only long-term care. It is as if policy-makers are often ignorant of how the cycle of life runs – that when people grow old, they need assistance and care.

In our country, the law brutally establishes that children and grandchildren must take care – financially as well as physically – of their family members who require around-the-clock assistance. Indeed, it is only natural to love and care for our close ones and continue doing this even when they are old and sick, but this should not become a 24/7 ordeal that makes the entire family, including children, and primarily caretakers, suffer.

I am speaking from personal experience, because I have nursed my parents for the greater part of my conscious life. My mother passed away on Christmas Eve last year, after having suffered over 40 years from an agonising disease. It is strange to admit that in a sense her death was a relief to me: a dearly loved person was freed from her torments and I from my feelings of helplessness and guilt that I experienced because of my inability to ease her situation.

In Estonia, things are really complicated with the elderly who suffer from dementia. On the one hand, regular nursing homes simply lack resources to provide sufficient supervision for patients who may get lost at any moment. On the other hand, institutions that specialise in providing such care have very long queues. Taking all that into account, I believe that there is an urgent need for nursing homes specialised in caring for people with dementia, because sadly the number of people requiring such care is constantly growing in Estonia.

Another issue is the high cost of such institutions as their monthly rates are in the range of 600–1,000 euros. Considering the average pension, it means that relatives are expected to cover at least half of such expenses.

It is namely due to such problems that there is much pressure on placing patients who require constant care into nursing care facilities. Family members are probably – although with certain difficulties – able to pay the cost-sharing rate, currently set at 9.20 euros, but that is the limit for the majority. Besides, in nursing care facilities, patients are under the constant care of health care professionals and help is available whenever new health issues occur.

Once, a nice idea was put forward to fund long-term care from three sources. The Health Insurance Fund would pay for treatment, local government for decent accommodation and patients the cost-sharing rate of 15%. Sadly, this did not work out in most places in Estonia and currently there are only two sources for funding: the Health Insurance Fund and the patient.

It is often the case that people dying from debilitating diseases require different types of assistance. It may be beyond one’s abilities to provide loved ones with such care at home. Family members who have to provide assistance to a dying person are often themselves in need of help. Family members are simply unable to cope with an extreme situation in which they witness the suffering of a loved one as well as experience feelings of helplessness in the face of a fatality and the inability to provide relief and support. They are unable to make peace either with the illness or the impending death.

More effort needs to be put into professional counselling of and providing help and assistance to close ones, because otherwise the family members of a terminally ill person may not be able to handle the stress and may become the ones who need help. No Excel table is able to demonstrate the loss that occurs to the state in such cases, because as far as I know, nobody has even dared to look into this matter.

One possibility to somewhat improve the current situation is to value the vital service provided by hospices. The work at hospices is solidly based on humanistic principles. They strive to uphold such universally recognised values as human dignity, equality and the freedom of choice. Central to their practice is treating the patient as a whole human being. It means that a person is viewed as a whole and his physical as well as psychological, social and spiritual needs are taken into account.

To be able to provide all-round care and relief to dying people, hospices have interdisciplinary teams consisting of doctors, nurses, long-term care nurses, pastoral counsellors, social workers, occupational therapists, psychologists and physiotherapists. Also, hospices attach great importance to pain control and palliative, quality care adapted to patients’ individual needs. Patients and their family members have access to psychosocial support and counselling. Although the very first hospice facilities have been operating for over ten years in Estonia, this highly vital service is not among the ones funded by the Health Insurance Fund.

The fact that people leave this world after a long life is not a tragedy, but the natural course of events. What is really important is to provide them with an opportunity to pass away with dignity. This is considered normal in developed societies. Dying with dignity and it being valued by society help surviving ones overcome the pain and sadness they feel and return to their daily activities. Let’s not forget that the day will come when all of us will grow old.


Source: Postimees