The exceptional situation experienced as a consequence of the COVID-19 pandemic has highlighted the need to seek a balance between security and emotional well-being in order to humanize care, as explained by the experts who participated in the webinar “Multidisciplinary approach: Palliative Care in times of COVID-19”, Organized by the Spanish Society for Palliative Care (SECPAL) and AECPAL.
During this virtual meeting, Isidro García Salvador, nurse and president of AECPAL and vice president of SECPAL, stressed that “In severe COVID-19 patients, the deterioration was sometimes very rapid, and follow-up had to be constant. Me I have missed family companions so much, because they can warn you when suddenly a problem arises. They told us: “You have to enter what is strictly necessary.” But in care everything is necessary. What do you take away? The compassion? Empathy? Active listening? Talk to someone who feels lonely? It is impossible to keep your distance as a caregiver. It is true that we must do it safely, but we have to adapt to the situation, study the disease, see what is safe and what is not safe, find a balance, seek strategies that guarantee protection, but allowing to accompany our loved ones, whenever they want it ”.
And is that, “caring in the distance is impossible. Surely there are safe ways to give hugs. We have to find a way, because hugs in the distance are very good, but keeping them in time indefinitely, I don’t think it’s the most appropriate ”, noted the president of AECPAL, who also referred to how they have been managed end-of-life situations in the context of the pandemic, remembering that although at the beginning of the epidemic there were people who died alone, in different Autonomous Communities, protocols have been subsequently elaborated that relaxed the prohibition of accompanying these patients.
“There are cases in which it has been allowed and others in which it has not been so, but there have been no uniform criteria. Some allowed the relatives of patients with COVID to accompany them if they had certain hours to live, but I have been working in palliative care for many years and I am unable to predict death with such accuracy. I personally think that something we should learn from this is the importance of not to put limits on the accompaniment of people who are in an end of life situation. In patients with COVID, companions should be provided with the necessary means for safe contact, and after dismissal they should probably comply with preventive isolation measures, but I think that should be allowed ”, Isidro García Salvador affirmed.
In relation to this, the experts who participated in the webinar revealed the improvements that have been produced as knowledge about the epidemic and its control has advanced, recognizing the extreme difficulty that decision-making has involved in the initial moments of the crisis. In this sense, Esther Limón, Family doctor at the Ronda Prim Primary Care center in Mataró and treasurer of SECPAL, indicated that “I have the feeling that we have felt so vulnerable, we have been so lost and, at the same time, we have felt so much fear – we went on to say that the new coronavirus caused a flu-like picture to see that people were dying of withering form – that in that context the catastrophe triage methodology and we follow it disciplined. We have been able to learn and now we can claim the humanization of everything we have experienced“But it would not be fair to evaluate the actions of March with the eyes of the present moment, when we did not know what to do and the priority was to ensure the safety of all.”
Primary Care physician, this expert also expressed concern about
the effects of this level of care being subject to the control of the
COVID-19. “We must begin to raise
how we will treat post-traumatic stress, burnout, Non-Covid patients,
post-ICU recovery and the impact of disruption on follow-up
chronic diseases. If we are so busy, how are we going to be
equitable? How can we serve people with quality and dignity in
the final stage of your life? I think the answer is called ubuntu ”, he said in
reference to a South African philosophical concept that expresses the importance of
common benefit: “I am because we
we are ”.
Promote advance and shared care planning
During the webinar organized by SECPAL and AECPAL, some of the participants drew attention to the need to generalize the call in healthcare practice Advance Care Planning. This was pointed out Rachel Martinez, a geriatric nurse at the San Pau residence in Barcelona, who recalled that implanting these working models, common in the field of palliative care, would favor shared decision making with patients and their families and it would allow them to respect their values and preferences in scenarios such as those that have occurred during the health crisis. In your opinion, “We must explore with families and patients their concerns, how they have lived it and how they wish they had, so that, if it were to be repeated, at least decisions would be made together, something that has not been like this now ”.
In a similar sense it was pronounced María del Puerto Gómez, a social worker at the Fundación Instituto San José and a member of the Getafe hospital and home support teams, who pointed out that if the shared care planning models –A concept more advanced than the so-called Living will– possibly they would have been reduced “Many of the ethical dilemmas” those that have been faced by social and health professionals during the COVID-19 epidemic.
In your opinion, “Lack of physical contact”With the sick and “The restriction of visits” which has involved controlling the epidemic “It will be a slab” that remains when evaluating the effects of the crisis, which is health, “But also personal, family, social and economic”, although it places shared solidarity among the profits obtained. “I believe that we have become a more compassionate country“ assured the social worker, for whom the pandemic has also broken one of the most deeply held taboos: “It has made let’s talk about death with less difficulty, which is present every day in the news, despite the fact that it has generally been in figures, and we would have liked it much better if it were in biographies“
For his part, Ismael Jamal, an expert psychologist in Psycho-oncology and Palliative Care and member of the Psychosocial care team of the CUDECA Foundation, highlighted the impact that COVID-19 has had on palliative care patients, families and professionals themselves. “All people with advanced disease or in an end-of-life situation have their processes, their tempos, their evolution … However, the epidemic has directly confronted them with their vulnerable situation. In the hospital setting, we have found that any type of symptoms suffered by their advanced disease has been subject to COVID. They should have face isolation, to the difficulties of communication with the staff and with their families and fear of death alone, in many cases”, he explained.
At home, he added, “The fear of going to a health center and getting infected has made them contain much of the symptoms they presented», and confinement “It has meant for many patients a irreversible loss of support and interaction«. Regarding the difficulties that the relatives have suffered specifically, the expert mentioned the fear of infecting his loved one, the obligation to establish changes in his dynamics and routines of care and, above all, “The absence of parting, closing rituals”, when a death occurred.
Despite everything, the participants in the virtual meeting valued some of the opportunities and teachings that the crisis is leaving, as the increase in creativity in search of alternatives to accompany and encourage: letters, video calls, professionals who have put their names on the protection screens or have entered the rooms with photos so that patients can give them put a face under the PPE, tele-farewells …
And all of them also agreed when acknowledging that there are things that they would do better if they could take advantage of the knowledge provided by what they have lived. “I think I am still in transit, but surely I would act differently in managing emotions, I would try a more active listening, a greater presence … But I am left with learning, strengthening relationships, teamwork, with that half smile or those tears shared with those who were crossing, with that person who saw you in overalls, double mask, glasses and screen and said to you in the morning: ‘How beautiful you came today!’, commented Rachel Martinez.
Now you have to anticipate possible regrowths
Given the possibility of possible outbreaks, Esther Limón stressed the importance of take preventive measures. “Let’s sit down, think about which have been the most vulnerable places of care, those in which patients have been worst treated, how we have cared at home, in residences, and if we can improve it. This stressful situation brings out the best in everyone: let’s stop and plan. There are many burning issues and it is time to solve them “, he claimed.
In this sense, María del Puerto Gómez pointed out that it is essential “relocate people to the center and make them participants in decision-making ”, a consideration he shared Ismael Jamal, who advocated also putting the care of professionals at the centerthat have been seen “On the tightrope” for having to face changing information, anxiety generated by healthcare pressure, changes in protocols, fear of contagion and infecting patients, colleagues or family. “We must be aware that, in high intensity situations, the expected results as professionals are obviously not going to be the same; the objectives have to be adapted, because we are also suffering from this crisis, and we must find spaces to welcome and express our fears and concerns”he stressed.
For the SECPAL president, Rafael Mota, it is essential that, after what has been lived, a correct “Planning and organization of needs and resources”to confidently face possible new epidemic waves, in order to provide patients and their families with adequate care in safe conditions –For them, and also for professionals– without implying a renunciation of humanizing care.