To be there…
Understanding Spiritual Needs and Offering Dignified Companionship in the End of Life Phase
Background
The Universal Declaration of Human Rights in Article 18 states that:“ Everyone has the right to freedom of thought, conscience, and religion; this right includes freedom to change religion or belief, and freedom to manifest in isolation or in community and both in public and in private one’s religion, belief, in practices and worship and observance of rites.”
Dying is first and foremost about relationship, the relationship we have with ourselves, with the people we love, with “GOD” the Spirit, True Nature or with that which in any case represents fundamental goodness for us. (Frank Ostaseski)
Spirituality can be defined as the set of aspirations, beliefs, and values that help organize man’s life into a unified project, imprinting an orientation on his way of situating himself in relation to reality. (Cancian M., Lora Aporile P.)
This introduction is to describe how dutiful and “ethical” it is to understand the spiritual needs of people at the end of life and accompany them to a peaceful and dignified death.
Accompanying…
Needs that relate to the sphere of seeking meaning in life and lived experience as death approaches, of finding meaning in what happens to them. Need to continue to be considered a “subject” despite the fact that illness causes a threat to physical, mental and spiritual integrity. Need for reconciliation with the past, need to feel in belonging to a group (family, association …) with which one shares affections, values, ideals. Need to answer existential questions of saying goodbye in a peaceful way and making appropriate moral decisions.
Needs that require appropriate spiritual accompaniment that does not necessarily have to be carried out by a pastoral worker ( priest, rabbi …. ) but can extend to all members of the therapeutic team assisting the person at the end of life since at the moment of death both the believer and the non-believer question : the scale of values to which they adhere, ask themselves questions about the meaning of life and death, suffering and joy , wonder why death is present.
Practitioners’ responses take the form of : noting the spiritual need of the sick person, establishing a deep relationship, being present in the territory of mystery and unanswered questions, helping them discover their own truth even though we may not share it.
It means “being there” since spiritual travail needs a witness.
These lived experiences in a setting of Italian and Slovenian communities joining together in the Karst area testify to and describe the diversity, complexity, difficulty but also richness of the work of nurses and doctors who accompany the person at the end of life.
Gaia is just 40 years old and, an ovarian tumor with peritoneal metastases blocking her intestines, can no longer feed herself or even evacuate. When we meet her she has just moved into her parents’ home, after a diagnosis that leaves no way out, to receive support and help. Our first meetings take place to ensure nutritional support through parenteral feeding and the administration of intravenous pain medications and antiemetics. She is very closed and reserved but daily contact for almost three months will allow us to get to know her better and accompany her on her final journey. A difficult and tortuous journey made of non-acceptance of the disease, a love for art, an endless desire to live and conclude projects, and a strong will to remain at home despite multiple complications from a clinical point of view. Accompanying Gaia on this journey, in addition to the home care nurses and palliative care physician and her parents is her brother.
His brother has been on a spiritual path for many years, and Gaia shares this path with him. They do not believe in a “God” but in the elements of nature, which are realized through meditation and self-healing techniques and breathing exercises. Gaia has a closure with the outside world, focusing only on the inside world of her home and body; she also experiences pain with extreme intimacy and privacy. She focuses on her breathing to expel the pain and get all the physiological substances that are blocked out of her body. She hears her brother by phone every day and receives his visits periodically as spiritual support. But as death approaches, she begins to ask herself questions and relies heavily on a nurse whom she has chosen and who assists her on a daily basis, asking her, “how does detachment happen?”, “what symptoms and/or signs accompany it?”, “what does it feel like to go beyond?” The nurse listens, does not judge, reassures her and answers her questions as much as possible. She dies peacefully in her sleep after three months, with the presence of her parents. Her journey has ended, ours still continues with attending the funeral and accompanying her mother to the cemetery to bring light to the grave.
Death is like entering a swamp, muffled, misty but serene. That door that closes softly and leaves the meaninglessness of life behind (Rita, home care nurse).
John and Tatiana are a special couple, living in a small town on the Karst in a house with a garden and part of the Slovenian minority. He is a carpenter craftsman, she an artist. A great love unites them; he cuts wood, she shapes it, and her creations that reproduce the rural environment in which they live beautify the house and those of their friends and fellow citizens. They love each other dearly, form a family and raise two children, and after a life spent together for more than fifty years they also fall ill together, with dementia and Alzheimer’s disease. Sickness that forces them into progressive physical and mental immobility, but the children choose to keep them in their original homes until the end with the help of two caregivers. The condition of John, now in his eighties, begins to deteriorate; in the last two months he can no longer feed himself and the few mouthfuls he manages to swallow go into his trachea causing several episodes of abingestis. The nurses who come to the home for hydration therapy and parameter monitoring find a close-knit family, attentive to the needs of their parents aware of the approaching end of life but also determined to keep traditions alive. The front door is always open, grief is shared with relatives and friends in front of a set table, among them a priest who spontaneously participates in the accompaniment, with the recitation of prayers and phrases of encouragement. A candle remains lit night and day until the end. John leaves us a few days ago, with great sorrow from the family, but also with much serenity from his children who watched him die in his bed on a spring morning, with the window open to the garden as the scent of flowers and birdsong came in and his granddaughter brought him a bouquet of daisies. To grieve, the tradition, includes a sung mass, a funeral with the band, which plays along the streets of the village, and a meal eaten all together after the burial in the cemetery until late at night. The table cannot be without bread ham and a good wine to say goodbye to one’s loved one.
These lived experiences continue to teach us that spiritual accompaniment consisting of traditions and rituals is as important as grief therapy and symptom control.; and, that means, not turning your back even in the most difficult moments but remaining present with respectful attitudes, in the territory of mystery and unanswered questions.
Raffaela Fonda – Nurse
Sources and Images