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Saying goodbye to a terminally ill person is a very difficult topic for loved ones. What should and should not be said to the dying person? How to support sick people in the last days or hours of life? The answers to these questions are provided by Dr. Paweł Witt, an experienced specialist in palliative care nursing and psycho-oncologist.
- From whom should a terminally ill person learn about this impending end?
- Such information should be provided by the attending physician – believes Dr. Paweł Witt, psycho-oncologist
- When talking to a sick person, the family should not lie, we should also tell the sick person as much as he wants to know – believes Witt
- You can find more such stories on the TvoiLokony home page
Who should provide information about impending death?
PAP: Who should inform the patient that he cannot be cured and may die soon?
Dr Paweł Witt: Tego rodzaju informacje powinien przekazać choremu jego lekarz prowadzący. W praktyce, lekarz powinien skierować pacjenta od razu do opieki paliatywnej (hospicyjnej), jeżeli oczywiście pacjent ma jednostkę chorobową kwalifikującą go do tej opieki, wyjaśniając mu jednocześnie tego powody, a więc np. informując chorego o tym, że leczenie przyczynowe jego choroby, np. nowotworowej, zostało właśnie zakończone, a rokowanie co do możliwości jej wyleczenia jest niepomyślne.
However, not always in such situations everything is as you described it.
Unfortunately, it happens differently. Some doctors still consider telling a patient that nothing can be done for him anymore, that is to cure his disease, as a form of failure. Doctors often use various tricks then, for example, saying: we will now refer you to a home hospice, and if you strengthen there, we will return to treatment in six months. This takes the burden and responsibility of having such undoubtedly difficult conversation off them, but of course it is not real and professional, as it may give the patient false hope and in practice is a form of lying to him. After all, in six months, this patient may not be among us, and a terminal illness will certainly not make him grow stronger.
Why is this happening? Are doctors not properly prepared to conduct such interviews during their apprenticeship?
I don’t think all the medical staff are well prepared for this. Palliative care is included in the education system of the medical faculty to a varying degree. At some medical universities, it is still or has been for a long time a voluntary, optional subject. Doctors who have not been trained in this field may therefore have difficulties with this, especially since each patient is different. You talk differently with a person who is 90 years old, and differently with one who is 20 years old, so there are no universal recipes in this area and you have to train in this field and gain experience.
How should the family talk to the sick person?
And what if the doctor for some reason was unable to provide the patient with this information himself, because the patient, for example, was unconscious, but the patient’s family already knows the truth? Should family members share this information with their loved ones?
It all depends on what the relationship is in this family. Generally, however, two universal rules should be applied in such matters: firstly, we should not lie, and secondly, we should tell the patient as much as he wants to know. Very often the patient is not ready to accept the whole truth and from what he hears from doctors or reads in medical records, he chooses only some information that he is able to bear. I think many sick people don’t want to know what it really is. Often they also have to mature for it.
Therefore, the real conversation about death and dying often begins only in palliative care, not necessarily with a doctor, but most often with another person whom the patient chooses for himself, whom he / she will get to know and trust better, e.g. with a nurse or another patient. A physician in a patient under palliative care is on average twice a month, while a nurse at least twice a week. That is why it is often the nurses who become the most trusted partners for the patients to talk about important and difficult matters.
- How to understand a sick person and care for him properly?
Jeśli chory nie jest gotowy na przyjęcie prawdy i rozmowę o swojej śmierci, a został już skierowany do opieki paliatywnej, to jak rodzina powinna się z nim komunikować? Ma wtedy po prostu unikać tematu zdrowia i śmierci, udając, że wszystko jest OK?
It depends on the specific situation. We should remember that patients go to palliative care at various stages of the disease and in very different states. Sometimes these are people who stay under the care of the hospice team for up to 2-3 years, others for 2-3 months, and sometimes only days. Therefore, it will be different to talk to patients from the first group, who are still often in relatively good shape, and differently to patients from the latter group, who are often bedridden patients, who require intensification of care and change of priorities.
Jak rozmawiać z umierającym?
We have already briefly discussed the first stage, i.e. providing the patient with information about an unfavorable prognosis, as well as his accustoming himself to death. Now I would like to ask how to talk to a dying person who has only weeks, days or hours left to live.
Na pewno warto być wtedy autentycznym. Tak naprawdę, żeby pomagać osobom umierającym, żeby być dla nich wsparciem, trzeba najpierw samemu troszeczkę pomyśleć o odchodzeniu, także własnym, a więc zmierzyć się z tematem, który wydaje nam się odległy, nierealny, nie dotyczący nas. My zawsze sobie tę granicę przesuniemy — bo jeszcze nie czas…
It is impossible to help someone go away if we ourselves displace this topic from our consciousness, avoid it or treat it as taboo. Unfortunately, it is not easy at all, because death is such a topic that we instinctively defend ourselves against, using various forms of denial, rationalization or denial. That is why I very often come into contact with patients who still do not come to terms with their soon-to-come death, e.g. those who do not feel bad yet, but their very bad condition is only evidenced by the results of diagnostic tests. However, many people who already have long, arduous treatment behind them also live to the end of false hope or conjuring reality. They are still counting on some kind of chemotherapy, radiotherapy or other form of treatment, often alternative, that will save them.
- Working with the dying is much more than just medicine
However, in the minority there are probably those who accepted what awaited them and, therefore, arranged all their worldly matters. There are also people who find it extremely difficult to utter this word – death, that is, to talk about their dying. Once I was taking care of an elderly man who, holding the duvet tightly, asked me: Mr. Paweł, do you think that it is worth buying air tickets to Australia for next year, because they are really cheap now (even though he has never been abroad all his life? ) ?. It is easy to guess what the man was really asking about and what he was unable to say.
And what is the best answer to this question about Australia?
The answers are always individual, not always unambiguous, and often have to be adapted to the current situation of the patient. I replied: If you really want to see Australia and it is your dream and you have money, then please buy this ticket, because dreams have to be fulfilled. On the other hand, it’s a lot of time – I personally don’t like to plan so far away, because life has surprised me more than once. The man did not ask directly and did not want an answer directly. If he asked if you think I will live to see Australia next year, I would personally answer: ‘How do you feel? How do you think? ».
Gdyby odpowiedział, że czuje, że tak i bardzo tego chce, to bym odpowiedział, że będę trzymał kciuki i będę starał się robić wszystko co w mojej mocy, by jak najdłużej pozostał w dobrej formie, chociaż na wiele rzeczy nie mam wpływu. Natomiast gdyby odpowiedział, że czuje, że nie, to odpowiedziałbym, że skoro tak czuje, to coś w tym jest i że to może być trudne, bo dużo czasu przed nami…
Jak rozpoznać ostatnie chwile?
When talking to a terminally ill person, you have to be very careful, weigh your words and watch them carefully to find out what their condition is. How can you tell when “this” moment is approaching?
First, let the sick person talk as much as possible if they want to. If a patient tells me: Mr. Paweł, I feel that I am dying, and I see that he is saying it seriously, then I answer, for example, do you feel this way? If he then answers yes, then I do not contradict his words, I accept them calmly. You can put a period here, take this person’s hand, but you can also go a step further and ask, for example: How do you envision your future?
The patient’s answer to such a question can tell us a lot about what he knows about his illness, as well as his current state, including mental status. After all, it is not said that he will die today, in a moment. It could just be his “bad day” or a symptom of depression. However, if someone says with conviction: I feel that I am really bad, I would like to say goodbye to my family, I feel that I am dying, I would like to go to the seaside for the last time – then you cannot deny it. Often the forebodings of the sick about the impending death, at least of those who remain alert to the end, turn out to be accurate.
So, when this happens, we are with the really departing person, what should we say and what not say to them, how to support them?
I think there is probably no topic that cannot be raised in a conversation with a dying person. Above all, however, it is worth being with her then, our very presence is the most important in such moments. After all, you can accompany someone to go without words, for example, holding only someone’s hand. If someone wants to speak to a dying person, it is worth saying nice things to them. Unfortunately, Poles do not like to overuse nice words, such as: I love you, you are important to me, I am glad that we are here together, I am grateful to you for what you have done for me, I want to be with you. In such difficult moments, it often happens that the relatives of the dying person do not know how to behave at all and they tell them something like: I will close the door for you now, and you have a rest, and then they leave. And what is this sick person to rest from?
- “Giving morphine to a patient does not mean that treatment has stopped”. Interview with Dr. Tomasz Grądalski, MD
In such moments, it is rather calm, or strong emotions are released?
It is different, but it is worth knowing that thanks to the development of palliative medicine, today we are able to eliminate or eliminate a large part of the severe somatic symptoms accompanying the end stage of the disease, helping the patients to leave in a good and comfortable way. If there is such a need and all other possibilities fail, you can, for example, introduce the patient to the so-called a state of sedation, i.e. a state of deep relaxation, reminiscent of natural sleep.
What we have talked about so far has mainly related to dying from chronic diseases, e.g. at home or in hospices. Now, in the midst of a pandemic, people often die in hospitals without being able to contact their loved ones.
Indeed, sudden, premature departure during a pandemic due to COVID-19, which often occurs in a hospital setting, surrounded by people wearing coveralls, without the support of loved ones, is something completely different and terrible. That is why it is worth doing everything to prevent it, taking the best care of yourself and your loved ones, incl. through proper hygiene and recommended vaccinations.
Interviewed by: Wiktor Szczepaniak, Zdrowie.pap.pl
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