Helping patients survive guilt, blame and loneliness: Palliative Care in Corona Times, Israel
Contributor: Amira Cohen, RN, PhD, Clinical Supervisor, Head of Palliative Care Unit, Shamir Medical Center, Israel
The staff at the Palliative Care Unit at Shamir Medical Center provide consultation for oncology and end-of-life patients, serve the pediatric and maternal wing, and support families experiencing intrauterine fetal death. The team focus on assessment and care of pain and other physical, psychosocial and spiritual elements that can improve patients’ and families’ quality of life. They implemented the Dying Patient Law[i]; and provide support to staff members.
Over the past year, COVID-19 patients and their families have additionally received care by the palliative care unit team. In addition to the issues faced by end-of life patients, patients suffering from COVID-19 faced emotional issues such as loneliness, guilt and blame regarding the transmission of the virus. Some patients and family members blame themselves, colleagues, synagogue members or crowds for transmission of the disease to other family members or for their death. The burden of guilt can be severe for the patient and for the family members, especially if the disease has led to the loss of their loved one.
Nathan (not his real name), an 85-years-old Oncology patient, had not left his home or met with his family members or friends over the past year. A few days after his last chemotherapy session, he developed a fever; it turned out that he had COVID 19 and had infected his wife. His wife was hospitalized in severe condition; and a few days later, Nathan was also admitted, in a different department. Nathan’s wife passed away; and he was devastated. After the staff broke the tragic news, Nurse Cohen, head of the palliative care unit, went to speak with him. Nathan told her that he was having flashbacks. When his wife was taken to the hospital, he hadn’t said goodbye. Amira asked him how he would have liked to say goodbye, and he said: “Give her a kiss on the forehead and whisper in her ear how much I love her”. He told her about his dreams in which he saw his wife standing in the kitchen, smiling while cooking favourite dishes for each family member. Amira asked him to tell her a unique story about them as a couple. Through all the 60 years that they were married, every evening, they met in the kitchen, had coffee and talk for about half an hour. He told her how they met, their relationship, mutual feelings, memories and the sense of security that their love gave them.
But he had strong feelings of guilt for unknowingly infecting her. “The feelings of guilt are so overwhelming that there is no use in giving explanations, answers or rationalization. The sorrow and guilt are intertwined and inseparable,” says Amira. When she asked him if he needed help dealing with his chaos of feelings, he answered, “I want to continue to talk about the guilt until I feel that I at least emptied that part from me”.
When the day came for Nathan to return home, he told Amira about the way he will feel when he steps into their home: “darkness and emptiness in my heart and walls that don’t talk”. He spoke about his mixed feelings of anger, loneliness and insecurity.
“Our mission as nurses, in general and in palliative care especially, is to be present, to contain and mostly to listen to the feelings,” says Amira. “To be there to hear that there is no justice in this world and in the ways of nature. To bring the patient to the understanding that to survive means to respect the memory of his loved one and continue in their path. To find the strength in each one of us, to be supported by our dear ones and to know that the process will take time and only then we will know that it was worthwhile to go through it for our children and grandchildren but mostly for ourselves. “
[i]The Dying Patient Law is a detailed and comprehensive law regulating the treatment of the dying patient. It was enacted on 6 December 2005 by the Knesset (Israeli Parliament)