Dr. Fátima Gonçalves, pastoral care provider at the Sisters Hospitallers’ Casa de Saúde da Idanha in Portugal since 2004, discusses her work in the palliative care unit; specifically, how patients experience the end of life.
As head of Pastoral Care services at the Sisters Hospitallers’ Casa de Saúde da Idanha in Portugal, I want to share my experiences with patients as they approach the end of life in the palliative care unit. I will try to be as faithful as possible: faithful to the sick, faithful to myself, and I guess, faithful to God. Faithful to the sick because despite our empathy, compassion, and solidarity, we will never know what they feel when they experience losses, when life eludes them, and when the hope they once felt ceases to echo in their thoughts. Faithful to myself, so as not to succumb to the temptation of idealising or embellishing the ‘journey’ that begins before the patient is admitted to the palliative care unit – a journey with its own heavy baggage that can be difficult to bear. And even to interpret their spirituality using mine as a reference and primary example. Then faithful to God because though well-equipped with care techniques and other expertise, I run the risk of believing I am self-sufficient when, in reality, without Him I am just a good technician. And I want to be more, much more, because it is the only way in which my involvement in promoting hope and the meaning of life makes sense.
Pastoral intervention in the St. Benedict Menni palliative care unit is based on the Hospitaller care model that shapes the process and lays the foundations for our provision of distinctive, humanised healthcare, promoting the dignity and value of human life in all situations and stages, and fostering a sense of hope that gives life meaning.
In the individualised monitoring I carry out on patients in the final stages of life, I slowly realise that their perception of what is fundamental in life changes, it is not always about wanting long-awaited dreams and wishes, but rather being open to a life-changing vision not just for the patient, but for their family and healthcare providers.
Since 2006, we have helped nearly 1500 patients, 99% of whom lived their final days with us. It is hard to know if ultimately they experienced acceptance, that conscious and calm acceptance. In cases of severe, incurable disease (mainly neoplasms), when metastasis invades the brain and the sedative effect of certain medications interferes with the patient’s consciousness, I can attest that they act as facilitators of what we can call ‘passive acceptance,’ in which the life force surrenders and ceases all resistance. But before giving in, whether voluntarily or involuntarily, there is a whole life that must be lived to the fullest in a short amount of time. And I am a witness of that! In the religious, and sometimes spiritual, service I provide in the PC unit, I see moments of peace for the ill, such as reconciliation with family members, reconciliation with oneself (when the vicissitudes of life cause low self-esteem, discouragement, and self-pity), and reconciliation with God, after having turned away because they did not truly know him.
I specifically remember a patient who reaffirmed the importance of an attentive and involved Pastoral Care service. He was lucid and communicative. During the pastoral welcome, he confessed to being a Catholic by tradition. However, though he appreciated my presence, he said he did not want religious care. Two days later, I learned he had asked for a priest to visit him. At first it seemed strange to me, so I spoke to him to find out exactly what had happened, and I called for the hospital chaplain to visit him immediately. He took the sacrament of penance; his general state of health declined and death drew closer. His pain intensified. By seeing him on several pastoral visits, I noticed an existential suffering that interfered with the regulation of his continuous and progressive pain.
He felt he had not been a good father and it weighed heavily upon him at that critical point in his life. After all, I had a father of two children in front of me. One was the favourite son, and the other was neglected for nearly a lifetime. The favourite son had abandoned him, while the other, now an adult who is aware of his father’s situation, did everything possible to ensure he received the best care. Already in the pre-mortem stage, the father and the neglected son met. They looked at each other, but could not touch each other… and a profound silence enveloped their words. One week later, the father passed away. This was the son who accompanied him in his final moments and who arranged the funeral. The favourite son never visited his father throughout all his pain and suffering. While he still in the unit with his deceased father, I kept the son company. He felt a sense of ambiguity: he had performed his duty, but felt as if something was missing. I told him his father had called for a priest to confess. He teared up, thanked me nervously and said, ‘I felt like he wanted to tell me something but couldn’t. He seemed different’.
This anecdote clearly demonstrates the importance of spiritual end-of-life care as an instrument to facilitate reconciliation in a person’s life, to tend to unfinished business. I do not know if the patient’s heart was at peace, but for the son, the fact that his father asked to confess was tantamount to asking for forgiveness, albeit indirectly, and if he had had more time left, he may have even gotten that to. Regardless, what he did served as a salve for his son. It is my belief that this conciliatory conclusion was only possible because the institution offered this resource, with the entire team involved and attentive to the patient’s spiritual needs. Thanks to our experience, we can understand the importance of accompanying family members and providing peace and tranquillity after the death of a loved one.
The challenges of the pastoral approach
There are many situations in which pastoral service, in conjunction with a multidisciplinary team, makes a difference in the holistic care of patients. For most patients, family is what gives meaning to life. It is family that provides hope and inspires us to pray to God for the chance to live a little longer to help our children, to see our grandchildren grow, to love a lifelong companion. In relationships such as these, there is always more we can do or say…
I would also like to mention Ms Rita. She was a single woman with no children from Alentejo, a die-hard land reformist She was never classed as proletarian, but she was able to enjoy the richness of her peers. She came to us with low self-esteem, intensified by the lack of pain management. She was filled with bitterness and rage and would repeat over and over how her bosses exploited her. She was 71, the youngest of her family, and never had the opportunity to meet her nieces and nephews, nor did she have any friends to come visit her. But she did have dreams: to learn how to embroider Arraiolos rugs, something she had never been allowed to do as a young girl (‘That was for rich girls’ she would say); to make a rug for the doctor who treated her like a real person during her most recent hospitalisation; to go to the cinema and see a film; and to go out on the street in a wheelchair.
In the month and a half that she was in the hospital, she managed to fulfil these wishes. Other wishes, known only to her, perished along the way. But I would like to share how this lady influenced my way of seeing and appreciating the little things. When I took her for a walk in a wheelchair through the garden—slowly because the vibration caused her pain—she drew my attention to the nooks and crannies I had never noticed, despite walking passed them every day: this or that tree, that she did not know about, but were so beautiful in her eyes. She had eyes blue as the ocean that she had never seen. The birds chirping, the small fountain into which she dipped a cork spoon (un cocharro) popular in the Alentejo region to sip water. These short strolls were her opportunity to travel back in time and, with my help, to rediscover fond memories. She had a lonely life, but she died in the company of a group of professionals who cared for her with affection and made her feel like a human being.
Lastly, I want to highlight the importance of the affection with which many of this centre’s workers welcome pastoral care and its integration into the multidisciplinary care teams as a distinctive element in the therapeutic process that enhances intimacy and the healing of the sick.