"The care the hospice nurses provided, not only to my husband but also to me, was tremendous. I will always be grateful to them. They were a pillar of strength for me."
"I would like to thank the hospice nurses for all their support and efforts during those emotional days caring for my mother. They do a tremendous job."
"[Hospice Nurse] Mary was our constant guardian angel with daily emotional and physical support to care for my Dad. Mary's expertise and knowledge allowed us to have a better understanding of what my Dad was going through and how to deal with it every step of the way."
As senior vice president of hospice and palliative care for the Visiting Nurse Service of New York, I receive thank yous like this quite often. Time and again people tell me about a simple gesture, a spot-on quick answer, or even a moment of just listening that helped them understand or adapt to the realities of end-of-life care. As we've explored in this blog several times, facing life at the far end of the spectrum can be a transformative experience -- it can also be a challenge. And that's one reason we so often hear expressions of gratitude from the families that we serve.
Hospice care requires unique expertise and skill. Our hospice and palliative care nurses undergo rigorous and specialized training that prepares them for the challenges patients face at the end of life. Nurses working in hospice also must possess a special temperament; many even consider it a "calling," in order to provide care and witness the final moments of a human life. The combination of skill and compassion that hospice nurses demonstrate creates trust with patients and families.
As we recognize National Nurses Week, May 6 - 12, we hope the following scenarios inspire you to reach out and share gratitude for a nurse or hospice worker who may have influenced you or someone in your life. These remarkable men and women walk among us every day -- how wonderful that we have this week to show them our appreciation for the good work they do.
Closure and Peace
At the age of 82, Gloria Behan* was in the final stages of her long struggle with breast cancer. As her condition worsened, she was referred to our program. At first, Gloria's children were concerned about transitioning their mother into hospice -- the word itself was frightening. It brought to mind the image of suffering and death. When they met Gloria's nurse Jenny* and discussed their apprehension they began to understand how the hospice care team would work to ease the suffering of someone they'd loved so dearly, and bring comfort to her in the last weeks of her life.
Hospice nurses are sometimes approached by family members inquiring into the rules of proper ''hospice etiquette." Should they maintain a serious tone during their visits? Would talking about what's happening in the own lives come off as callous? "Humor and death don't often go hand in hand, but a hospice setting puts a new spin on the old adage, 'Laughter is the best medicine,'" says a nurse on one of our teams. "Families look to the nurse for cues on how to behave, and observing my upbeat and relaxed tone immediately puts everyone at ease."
The family of one 90-year-old patient was extremely reverent and would tip toe around the room every time they'd come to see him. Their anxiety about upsetting the World War II vet was making everyone feel awkward, including Jim*. The turning point for the family was when they walked into the room to see their hospice nurse laughing uproariously with Jim, who cracked, "Don't look so serious -- it's not as if someone has died!" Jim's ability to joke and poke fun reminded his family that he was still the same vibrant person they had always known and didn't need to be handled delicately.
Gentle laughter is frequently used by our nurses to bring out a patient's personality and ease them into reminiscing about positive life experiences -- something that can make a compelling difference in a patient's ability to come to terms with dying. No matter what stage of life, a person's ability to find the humor in a situation remains a priceless coping method.
Hospice is about living life to its fullest and treating patients with dignity and respect, and hospice nurses can become very skilled at unearthing activities that connect their patients to life's greatest pleasures. Nurses understand that even though a patient may seem withdrawn, they may be constructing a wall to mask fear of the unknown.
After weeks of unresponsiveness, one patient's family began to give up hope that she would ever smile or interact again. The hospice nurse found out from the family that their mom was a huge dog lover and decided to bring in a 2-year-old therapy-trained dog named "Bob." Within moments of the first meeting, the patient lifted her hand, reached out to the dog and touched him on his head.
Stimulated by her new canine pal, our patient became more responsive over the next few weeks, engaged in her surroundings, smiling and speaking again with friends and family who visited. As she stroked the dog gently, she relived heartwarming memories about her many pets over the years, reminiscing until the very end.
Hospice nurses try to convey to family members that the last stage of life can sometimes be a catalyst for change. "Patients often express regrets over not having made more time for themselves, not pursuing their true calling or underestimating the simpler pleasures in life," says Jenny. Hospice nurses make it a point to have these types of honest conversations with their patients and find creative solutions to help them complete unfinished business.
Although physically immobile, Gloria remained cognitively alert till her last few days and was hungry for intellectual and cultural stimulation. Jenny discovered Gloria's passion for current events and enlisted a hospice volunteer to read her from the daily paper each morning so she could stay abreast of the news.
Another nurse tells the story of a patient who swore she could have been a great singer if only she had made more time for herself. "So I arranged for a volunteer choir to personally serenade her," says the nurse, "and there she was, belting out her favorite songs right along with them. She was thrilled -- and actually pretty good, too!" Another nurse arranged for a volunteer to help a patient put together photos and mementos of the wonderful life she had led. The unveiling of the scrapbook to the woman's family weeks later remains a cherished memory.
Appreciating a Life
Death is inevitable, but the journey to meet it does not necessarily need to be filled with pain and suffering. A common misconception about hospice is that it is only recommended for patients in the last few days of life. In reality, it is a lifeline for both the patient and the family, an opportunity to be cared for not just physically but emotionally and spiritually. The earlier you come to Hospice the more opportunity for enhancing quality of life, promoting effective communication among family members and health care providers, understanding what to expect and making decisions that are aligned with your preferences and values.
While no one truly knows what the future will bring or when, knowing that we have choices, and that skilled, compassionate professionals are there to help us at end of life can truly be an affirmation of a life well-lived.
Here's to the hospice nurses called to make that happen.
*Some personal details, such as names and dates, are changed to retain the privacy of our patients.