Abstract
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Dear friends! The reason for this letter is none other than to thank you for the treatment received by both my mother and my whole family. We are happy, or we might even say, “delighted” at having been able to share, in such a dignified manner, our mother's final days, during which you, dear friends, were such a great help, from the most menial worker to the most prominent amongst you. I still remember the anguish I felt at the news I was given about my mother and the calls I made to you, which left me feeling calm and comforted. I remember each time I set out (towards the hospital), how my stomach tensed up and how the tension kept me from thinking […] I remember going through the hospital door and how, as if by magic, my body was filled with peace with every step I took […] and there you were. So many questions! So many answers and my God! How much better I felt. I remember the conversations, the gestures, the warmth and above all, the sensation of peace which fills every corner of your “home”, where I felt so very much at home myself. […] And the moment arrived […] And friends, once again, there you were, silent, there but not there, distant yet near, your absence and your presence […] broken with pain, a pain which lasted six years, I saw death before me, without fear, free from resentment and above all, thanks to you, that indescribable feeling which is brought on by death, the loss of a loved one, which manages to be as near as can be, to something quite “natural”. […]I will always be grateful to you and I thank God for the privilege of having seen the beautiful face of death which, thanks to you, I now know exists.
From time to time, medical departments receive letters of thanks from patients or their relatives, once the therapeutic relationship has ended. These letters hold a profoundly touching meaning, one might say sacred, for those who have been participants in a clinical relationship. A “thank you” is always moving; but, thanks for what? Thus, getting a letter might be the occasion to recall the situation, regarding it now from a distance, acknowledging, and enjoying the many good things that are always present in human relationships (despite the momentary prevailing feelings of suffering, fatigue, etc.). We feel relief and the will to go on, after reading the gratefulness expressed by the daughter of our patient, despite the great pain that the situation caused. She is giving us thanks for many things: the way she was treated, the atmosphere of peace and kindness, where she felt comfortable, as if at home, the presence of professionals, and the help to dignify the final days of her mother's illness. When it came, death was not now the enemy or a defeat, but was accepted as part of the reality of human existence, to the point, of having, in her own hyperbolic words, a “beautiful face.”
Reading over this letter again, we are struck by the specific reference that this relative makes to “dignity” during the final days of her mother's life, up to the moment of death. Person-centered care and dignity-conserving care are both goals of specific trends in clinical research (dignity therapy) at the end of life. “Dying well,” “dying with dignity,” is the main concern that we hear at the bedside from both the patients and their family. As professionals, the task of assuring dignity at the time of our patients' deaths involves our help every day and demands that we make specific decisions.
After years of clinical work in palliative care, we have learned that the idea of living one's final days and then dying with dignity are not so much conceptual categories, as personal experiences, which themselves are subject to value judgments, circumstances, and actions. Reading the letter, it was natural for us to look back at our caring relationship, looking for some event that could have indicated the “success” described in the letter. Frankly, in that situation, we performed many tasks (symptom control, communication, psychological support, openness to existential issues and family carer concerns, and so on.) and obviously we did our best in each of these tasks, but at the end of the day, we didn't do anything we wouldn't do for any other patient. So, what was so attractive about our daily management of this patient? Although we suppose that both the patient and family also appreciated our expertise in symptom control and supportive care, it seems to us that the key to “success” is revealed in the words of the letter itself: “presence and caring.” It does not matter how difficult the medical decision making is, it does not matter whether it is challenging for the doctor, or whether a heroic decision is made. Not every one of our patients and their family carers is able to recognize the devotion present in a “medical” act. What they can recognize is the manner of caring, a purely human trait that is at the foundation of our relationships. This human compassion is the universal language that everyone can understand.
Founders of palliative care have shown us that simple presence is the most genuine act of compassion. “Watch with the patient” was one inspiring thought of Cicely Saunders. 1 Being there even when “nothing” else needs to be done, being there not to fix something or perform some task, being there not to get a result, but only to value the patient in his or her dignity. Because the patient is worthy, and nothing is worthier to the palliativist than his or her patient.
As palliativists, our aim is not to fight against a disease, but to “preserve” the patient's humanity in the time terribilis of illness, the journey to death, when the patient's humanity, in all its entirety, is threatened by the disruption. Perhaps the miracle of restoring the dignity of the dying patient is not in our personal skills and abilities, but in the heart of palliative care itself, it is the way it looks at dying people.
Sometime ago we read, “Palliative care researchers are pursuing a creature that we know exists, but are not quite sure what it is or how to find it. We recognize good palliative care when we experience it”. 2 The letter we received is, to some extent, proof of that. Experiencing dignity in care is something different from simply talking about that. Patients and family members who have experienced palliative care become the most authentic witnesses to its true value.