Many Heartaches in Hospice – One Family

This article is one that weaves together reality for a family; professional growth for those providing care and techniques of listening with all your senses in order to provide the best care possible in the worse possible times. For some I think it may be meaningful. it may enhance best practice among clinicians. It may help to dispel hospice myths of the work being done by those who work with patients and families. Hospice care does not end at the death of a patient, it extends to the families and those who loved the patent, often involving attending funerals, memorial services and providing bereavement follow-up for months after a death. This article speaks to one such family, and one such patient. It was the ending of a life. A life that involved a young man, diagnosed with a rare and rapidly progressing cancer diagnosed on January 16 ending with death a little more than a month later.

The family dynamics were yet another shock to the system, dysfunction added to the trauma of impending death that required crisis intervention lasting approximately seventeen hours, utilizing the talents of an interdisciplinary team (MD, RN, Chaplain, Volunteers, and Licensed Clinical Social Worker (LCSW). Those dynamics included the patient, his mother and father, a sister who was the power of attorney (POA), a fiance, the wife (with whom the patient had been separated from for more than a year, although not legally), two beautiful children ages 14 and 10, and supportive friends, each forming their own division of “camps”.

The children had just learned that their Dad was dying less than twenty-four hours prior to death. The patient was lucid right up until his death, and asked that the team attending to him not let the ex-wife in to see him. He stated that his fiance was the love of his life and expressed his profound and heart-rending worry for her. This young man had shared with me that he hoped to have some time to “get used to” the fact that he was dying. He said those very words to me just twenty-four hours before his death. It was indeed a time of tremendous stress and heartache for all, including the team of seasoned professionals.

We again witnessed a complicated family system that that challenged beliefs, of an entire family and the team in the Acute Care Unit. Many of us looked at this patient and saw visions of ourselves and for some their families as well. He was but forty years old, hospice care in orange county  his life just beginning.

How very tragic. No one ever said that life had to be fair, we all need reminding of that it seems. With the patients’ mother, dad, sister, fiance bedside, I found myself running up and down the halls attempting to facilitate balance between those very divided and dangerous “camps”. The fiance was safely kept from the ex-wife, as threats had been witnessed and seemed to be escalating. The children were brought in and out of the room several times in order to allow them the opportunity to be with their Dad, to lay beside him in the bed, to sit and be held by his mother, their grandmother. There were multiple hours of play therapy, reality therapy, compassion and hugging for two children who were being torn apart as they were all to quickly realizing that death was imminent and lasted forever.

At times feeling like the CIA/bodyguard, I ushered people in to see the patient; I escorted people out, and I held family members and friends in my arms while attempting to validate and embrace their pain and anger. I was constantly amazed by the patients’ ability to put his arm around his children and family, maintaining his honor and pride. He would look at them in a way that words cannot describe, and with an intensity rarely seen.

 

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