Palliative care is the active, total treatment of patients with incurable diseases, which also involves giving support to their families. The remarkable advances in intensive care have significantly improved the chances of treatment and survival of the critically ill, but intensive treatment and prolonging life are not always to the benefit of the patient. Only those who are in direct danger of death, but at the same time, their condition is not obviously hopeless, belong to the intensive care unit. Ethical dilemmas at the end of life in intensive care medicine are, therefore, often related to the question of when does intensive care lose its meaning and primarily becomes a burden to the patient.
In a statement for the media, the Minister of Health, Tomaž Gantar, explained that the state coordinator for palliative care had prepared the filing form, which serves to assess the health condition of the person being cared for in the home for the elderly, before the possible infection. Given that the doctors in the nursing homes change, such an assessment is helpful to the physician when deciding how to treat a patient in case he or she becomes infected. However, the filing form does not determine in advance what the treatment will be like, should the patient get infected. We asked the author and coordinator of palliative care, Mateja Lopuh, about the filing forms and the accusations that the Ministry of Health has been receiving in recent days.
In light of preparations for the containment of the coronavirus epidemic and the development of the best strategy for its management, the Ministry of Health approached the matter with both organizational, as well as professional assistance. Given that in all countries, as well as according to the recommendations of the World Health Organization, a strong emphasis was put on the palliative approach, the Ministry connected with the European Association for Palliative Care and relied on the recommended algorithms and guidelines they published.
Example: Extract of German recommendations for palliative care therapy of patients with COVID-19
In the event that we cannot achieve the set therapeutic goals with the help of the therapeutic measures at our disposal, we do not recommend a therapeutic measure that does not make sense for an individual patient. In practice, this means checking for possible comorbidities in the patient in question and the possible presence of a pre-expressed will (available and correctly filled out pre-expressed will form). The decision to limit therapeutic measures should be made before the start of intensive treatment and, as much as possible, in agreement with the patient and relatives.
Based on the published recommendations, an Algorithm for Action was developed to assess the stability of advanced incurable chronic diseases, which was accompanied by recommendations for relieving symptoms in case of co-infection with the coronavirus. The document was sent to all healthcare providers, professional bodies, and the Health Insurance Institute of Slovenia, with instructions for the organization of healthcare activities with the attached algorithm.
The purpose of developing the algorithms was to assess the health status of residents in the phase without infection, which would also allow for the assessment of the impact of infection, should it occur. Precisely for the fact that it would not be a matter of guessing how sick the resident is, but rather, an expert assessment, the algorithm was accompanied by two tools, which are internationally validated and enable an impartial assessment of the resident’s condition.
The doctors were thus given the option of an objective approach that would clear them of any possible accusations, for example, the accusation of not referring someone who is infected because they do not like them, or because they do not like their relatives. A sudden worsening of the underlying disease without infection would thus mean that it was that disease that had progressed. And if the infection had been detected, it would mean that the patient’s condition had worsened because he became ill with the virus.
The residents of the nursing homes, as well as their relatives, were generally aware of their own or their relatives’ health status and the prognosis of the advanced, incurable diseases. No special notification is required for family doctors to write out their diagnoses on new forms. In the event of an infection, however, they should have been notified of whether hospital treatment is planned, or not.
The form allowed for the relatives to be included in two places. In the assessment of the underlying disease, it was allowed for the doctor who had not yet discussed this with the relatives or with the patient and has assessed that communication would be wise, to talk to them about the assessment. In the case of a co-infection, it was specifically pointed out that the relatives must be informed of it and that the patients will, if any, must also be taken into account.
The forms were not intended as “stock assessments,” but only as an aid to the physicians
The forms were not intended for any kind of “stock assessments.” Analogously, it could be argued that all medical records containing important medical information are just “stock.” The form is just a collection of patients’ diagnoses and an assessment of how these diseases have already progressed. An ethical assessment of the form is not required in this regard. Analogously, we should then ethically assess the referrals or medical records that state that the resident will not be taken to the hospital.
In case of an infection, it is necessary to assess whether the course of the infection is severe, and in this case, it also needs to be assessed whether hospitalization would be justified for the resident in the event of a more severe course of infection. The form indicates that the doctor also has the opportunity to ask the council for help – to arrange for the council to advise on the matter. The judgment regarding the referral is always in the hands of the attending or on-duty doctor.
“Even if someone desperately wants their disabled grandmother with severe dementia to be treated with more aggressive approaches until the bitter end, an assessment of what is more humane for the patient must prevail. Yes, sometimes death is more humane than prolonging life forcefully. This, however, does not diminish the importance of palliative care; quite the opposite: it demands that palliative care be developed more seriously in Slovenia, as there were no pre-prepared palliative care plans, and the time of the epidemic is unsuitable for quick decisions – but it was necessary to decide,” doctor Federico V. Potočnik, an infectious disease specialist at the Celje Hospital wrote in his article for the newspaper Domovina, answering the accusations.
The Ministry of Health is aware of the fact that the palliative approach is still unevenly introduced in Slovenia. Therefore, they also organized a network of palliative care counsellors, to help the medical staff, both in assessing the underlying diseases and in relieving the symptoms. It is ethically and professionally controversial to send patients to the hospital in their last stages of life, regardless of the possible infection with the coronavirus. Such patients should be provided with palliative care in the environment of the nursing home. Both the patient and their loved ones should be made aware of this. In such cases, the doctors were able to write on the form that the referral to the hospital is not justified, even if the patient was not infected with the coronavirus.
All of the documents were prepared in order to make the work of doctors in the field easier, and their use was not mandatory. For the doctors who already had summaries of conditions in the patients’ files, it is understandable that they did not even need the filing forms. Some doctors only attached a computer printout of the diagnoses and therapies the resident was receiving.
Potočnik also explained why certain things had to be planned in advance. “In our region, the nursing home in Šmarje pri Jelšah was affected; what if the same thing had happened to five or ten more nursing homes in the region, that gravitate to the Celje General Hospital? If that were to happen, we would have been forced to move on to a cruel war triage. Back then, we heard reports from Italy that only those under 60 (!) were put on medical ventilators. We had to plan a response to help as many people as possible, focusing on those who would benefit from the hospital treatment.”
Thus, the doctors did not assess the justification of the treatment, but the state of health of their clients, which is the basis for further referrals to the hospital. Someone who is very debilitated from other illnesses will not benefit from going to the hospital at all, but the referral would affect his quality of life. He could stay in the nursing home, in a familiar environment, in his own clothes, whereas in the hospital, he would have to lie in the hospital room in a hospital gown, alone, without visitors, until his death. And death would occur in both cases, sooner or later.
“We are not mobsters, and we are not murderers, as the show Tarča tried to portray us. You can make anything seem real with a camera. I remember a lady who was with us because she got infected with the coronavirus. Despite maximum oxygen, her health was deteriorating, and her heart disease would not allow for intensive treatment. Although she was calm, I could see it in her eyes that she was leaving. Finally, she told me: “Let me go home.” There were no journalists there then, no cameras. That lady died alone that night, far from home, in a hospital room,” Potočnik explained.
Throughout the epidemic, the Ministry of Health neither called for nor required physicians or other nursing staff to compile lists of patients, for any purpose. As Potočnik added, a bitter aftertaste of searching for an affair is left behind, which introduces discord and mistrust in society. He also addressed the reporters who created this dirty affair, telling them that they should be aware of their responsibility to the society.
Sara Kovač