- Palliative care is a complex of medical, social, psychological and spiritual interventions aimed at improving the quality of life of terminally ill people or those whose life prognosis is pessimistic, as well as their families (WHO, 2002). The purpose of this type of care is to alleviate the symptoms and reduce the suffering caused by a serious illness.
- This year, for the first time, a report on the observance of human rights of those in need of palliative care was presented in Ukraine by the Commissioner for Human Rights. The main violations found in palliative care facilities are ill-treatment, and violations of the right to adequate medical, legal and social protection.
- Besides, there are many problems associated with the provision of painkillers, special facilities, the qualifications of medical staff, and the provision of psychological assistance to patients and their families.
- Ukraine needs to bring palliative care in line with international standards, in particular the European Charter on the Rights of Patients, the Council of Europe Parliamentary Assembly Recommendations on the Protection of the Rights and Dignity of terminally ill and dying, and the Council of Europe Committee of Ministers Committee of Ministers Committee Recommendations help, etc.
Olesia Lytvynova — Volunteer, founder of Frolivska 9/11 – the volunteer centre to help the IDPs, Chair of Board of “Svoi” (Our People) charitable foundation.
II felt confident as a director and I wasn’t going to change anything. I made films at my leisure and could do creative work, not just work for money. But in 2013, I discovered I was pregnant with my fourth child. Then I felt that I wanted to take a break from work – I realized that this was my last pregnancy. I wanted to stay at home, enjoy this condition, immense myself with it, and then get creative again. Well, the peace lasted during September, October, even the beginning of November. Then the Maidan protests started, and everything changed. I went through different stages, from “I’ll go find out what’s going on” to “Oh, there are Berkut (riot police – ed.) officers waiting for me next to my home, I can’t go home.” And at some moment, it became clear that I’ve passed the point of no return, there is no other direction.
After that everything developed by guess and by gosh. What was Maidan about? About freedom and dignity. Therefore, everything we did after was about freedom and dignity. About the human right to a dignified life, and, as a logical follow-up, to a dignified death.
I do not understand when people are surprised that hospice palliative care staff do their best for people who have a year of their life left, or even less. But people who have so little time left have an advantage on us: at least, they know what they will die from. Neither you nor I know when or what will happen to us. You get out, get in the car, and then bang! And life is over. Did today have any sense? Probably, it did. Was it worth living it with dignity? Probably, it was. Would anything change if you knew in advance how the day would end? Most likely, yes. In this case, this day would be even more intense, more important – that’s the difference.
Life in its entirety should be complete, full-fledged, not in vain. And death is simply a logical point on this path, as simple as that.
When I am asked how do I live with this, with so many deaths that I’ve seen with my own eyes, I ask in response, “How do midwives live?” Every day they see someone born with their own eyes. Does it strongly affect their picture of the world? It’s just the natural course of life. People are born and people die. It’s very sad when people die, very sad when people die early without doing something they wanted. It’s sad when people die suddenly. It’s sad when people die from serious illnesses or injuries.
And when you can somehow remedy or mitigate the situation, it is good, isn’t it?
No story goes without leaving a trace, but some etch in memory more than others. Like the story of Lera. She had just turned 18 and was diagnosed with osteosarcoma too late. When it became clear that she had about a month left, I took her home. She lived with me, I just could not let her go hospice. The child suffered so much in her life – she was an orphan with her father alive, and all of it was so unfair. Especially at eighteen, when the whole world is opening in front of you.
I spoke to her honestly and showed the X-ray images of her lungs. She asked, “Does that mean I’m dying?” “Yes, Lera. And nobody can do anything, unfortunately.” She cried, then wiped away her tears and said, “Let’s go to McDonald’s.” So we went to McDonald’s. And we were going out every day for a month and a half. There was no sense of pointlessness, no sense of doom in it. Well, somebody could say, “They went into the store, bought a beautiful dress, and they both know that she will never wear it.” Because that’s not the proper season for this dress now, and she will not survive until this season under any circumstances. But we really wanted to. She tried the dress, it fit her perfectly, we took two photos of her and the dress went on the shelf. A day before her death, we went to a concert with her, we were having fun, we were joking and drinking cocktails. It was fantastic!
She lived with me, and it was very personal for me. Very personal history. She called me mom for the first time before her death, and I miss her a lot. I still miss her a lot.
When a person is about to die – I mean the final days – you can see it in their eyes. It is impossible to describe, but when you see it, you will understand that it is happening. You can’t confuse it with anything. Moreover, if you are two, three, four times near the dying person, you will be able to say how much time they have left – one day, two hours, 15 minutes – with 30-minutes accuracy. It is impossible to describe this feeling in words.
You should always discuss with your loved one about how you will behave when it gets worse. Will s/he take medication that may give extra few months of love but produce an array of adverse effects? Does s/he want to be taken to the ICU and risk that s/he may die there? The patient should make the decision for her or his life. You should think how you will communicate if the patient is not able to speak. Which signs will mean “yes” and “no?” How to learn to read on the cards. No need to be afraid of such conversations. It is better to treat them without prejudice. The person should also know what will happen to them, what is waiting ahead. Lack of knowledge is exhausting and frightening.
We call our patients “the patients who are leaving.” And they are all very different. Some of them joke and encourage those around them. Others comfort their loved ones until the last seconds. The relatives are crying, and the patients – sicking nigh into death – may be tweaking on their cheeks. There are those who require enormous care that they lacked in their lives. It depends on the character, it depends on how and when they discovered their condition, it depends on basic education even. The more intellectually advanced a person is, the easier it is to take things as they come and go through them with dignity.
There is a concept of poverty of impressions – when a person robs themself as if living only half of their life. As long as there is an opportunity, the best that one can do is to be filled with impressions. Collecting emotions, letting them into your heart and under your skin – and there is a chance that the light of memory will dispel the darkest times.