Providence and the Care of Hospice

by T. L. Wagner, MSSA

Some people may wonder why we would consider involving hospice in Uncle Chuck’s care, since he was already getting top-notch care in the nursing home. In many ways it seems redundant and unnecessary, but I had experience with hospice services not only as a healthcare professional, but also personally when my mother was terminally ill 4 years ago. I have a strong and abiding respect for the work that hospice does. For me it was a natural progression in Uncle Chuck’s care, but I also realized that Aunt Marie and most of the family did not have any awareness of the philosophy behind hospice and what it could mean to Uncle Chuck as he travelled toward the end of his earthly life.

It was over this weekend that the most remarkable evidence of God’s providence surfaced. It was on Sunday, November 9, 2008 when Aunt Marie was reading the Post-Gazette that she noticed an obituary for Florence Wald, an American nurse who was the former dean of the Yale School of Nursing. I don’t know what prompted Aunt Marie to read the obituary of someone of whom she had never heard except the presence of God’s providence. What is so important about this article about a 91 year old lady who had died quietly at her home in Connecticut is that Florence Wald is considered “the mother of the American hospice movement.”  The value of this news item is that it mentioned how Mrs. Wald had championed the goal of hospice to provide palliative – or pain lessening – care for terminally ill individuals with the intention of allowing them and their families to focus on their personal relationships, spiritual needs and preparation for death. It was the idea of the support for the patient and their loved ones that Aunt Marie found most appealing. Hospice would give Uncle Chuck a full measure of dignity and comfort as he became less able to express his thoughts and needs while assuring that he would not experience the pain and discomfort of futile efforts to sustain a gradually dimming life.

We chose to enlist the care of Family Hospice. At every critical moment, Family Hospice was there with support and reassurance. The nurses were able to clearly explain to Aunt Marie what care was being given and how they would keep Uncle Chuck comfortable and pain-free. She noted the tender approach they made in addressing Uncle Chuck’s needs and sincerely appreciated the patience with which they answered her questions and listened to her concerns. It was the day before Thanksgiving that Uncle Chuck experienced a dramatic deterioration in his condition. He slipped into an unconscious state overnight and was experiencing very labored breathing.  

Aunt Marie was very distressed by this rather unexpected change, but one of the hospice nurses in a gentle but straightforward manner explained the dynamics of what Uncle Chuck was probably experiencing and reassured her that he was not in pain. Although she had come to respect the role of the nursing home nurses and aides, it was the ability of the hospice nurses to spend the extra time with her – and Uncle Chuck – that reinforced the notion that her decision to enlist hospice was a good one. The hospice social worker and a chaplain also stopped by to spend time with us.

We stayed with Uncle Chuck until late that evening. As we sat at Uncle Chuck’s bedside, Aunt Marie discussed many aspects of their life together, but ended up focusing on her decision to bring Uncle Chuck to The Willows and involve Family Hospice. It was very comforting to her to realize that the quality of care that he received was so extraordinary. But more importantly, she appreciated the fact that being free of the rigors of daily caregiving, she and Uncle Chuck were able to focus on one of the central tenets of the hospice philosophy, their personal relationship. It enabled Uncle Chuck to tell his wife that he loved her and appreciated the sacrifices she had made on his behalf. And it allowed Aunt Marie to savor the role she played as her husband’s mate and caregiver. When Uncle Chuck died on Thanksgiving Day, Aunt Marie was at peace.

Socrates, the ancient Greek philosopher, defined three levels of happiness: pleasure, honor, and contemplation. It had been many years since either my aunt or uncle experienced true pleasure, given the pain and difficulties of the situation. It had not been an easy or enjoyable ten years, given Uncle Chuck’s declining health and the rigors of caregiving.

But Aunt Marie could find a glimmer of happiness in the knowledge that she did an honorable job as she kept her commitment to her husband. Socrates notes that honor only comes from the sacrifice of some other interest or pursuit to achieve a greater good. Aunt Marie had put her needs and desires aside to meet the challenge of caring for Uncle Chuck. But the most satisfying level of happiness, contemplation, can come only when we have time to quietly and calmly assess where we have been and what we have done. Being free of the all-consuming task of caregiving and receiving the reassurance of the hospice staff, Aunt Marie was able to finally review all that her life and marriage held. She was able to evaluate the good and the bad, the difficult and the easy. Most importantly, however, she was able to recognize the role of God’s divine providence in her life. It gave clear evidence that it was wise to “trust His guidance.”