Most of us live our lives as though we have infinite time, and people are too often ambushed by what feels like a sudden end of one’s own life or that of a loved one, said Lynn Crawford, a registered nurse and case manager for Hospice of the Foothills.
After working for more than 20 years with people near or at the end of their lives, Crawford says there is much to be learned from the dying.
It’s during this time of shock that hospice workers — nurses, social workers and bereavement counselors — play a vital role in helping people accept the inevitability of death.
“What strikes me is that even those ill-equipped or unfamiliar with death step up to the occasion in such a beautiful way,” said Debra Dworaczyk, medical social work supervisor for Hospice of the Foothills, the largest provider of palliative care services in Nevada County. “We offer support, but families are often quite capable, even when they don’t initially know they are. There is a certain intuitive wisdom — I’m constantly reminded and renewed by that.”
Every death, every family, is unique, added Dworaczyk, but there are commonalities.
“Time and time again, I’ve seen the end of life be an extremely rich time of reflection, reconciliation and forgiveness,” said Crawford. “People become very authentic and say the most profound things.”
In the end, it’s all about relationships and connectedness, she added.
“I see a lot of people reflecting,” echoed Suzanne Koliche, who, like Crawford, is a registered nurse and case manager for Hospice of the Foothills.
“When people are close to dying, they’re not thinking about their stuff — just the people around them. I guess the lesson is to live a life without regrets. It’s sad to witness someone who is regretful during their last days. One of the aspects of hospice work I find gratifying is when people can forgive one another.”
Dworaczyk agreed. “I guess what it comes down to is that relationships matter,” she said. “I don’t hear about careers and accomplishments. Often part of the dialogue is life review, but, really, when someone is facing death, it’s the people in their lives that matter.”
Supporting the process
Because of the caring, support and counseling families receive from hospice care providers, studies are now showing that patients in hospice statistically live longer.
Hospice is based on a philosophy of care that is especially created for and dedicated to those facing the end of life, said Vanessa Bengston, HOF’s executive director. It’s for a person with a life-limiting condition who’s expected to have six months or less to live.
This doesn’t mean that hospice care will be provided only for six months, however.
Care can be provided as long as the person’s doctor and hospice care team certify that the condition remains life-limiting.
Care focuses on maximizing comfort for a person with a life-limiting illness by reducing pain and addressing physical, psychological, social and spiritual needs.
Hospice team members are specifically trained in matters that are commonly encountered at the end of life.
They are also able to provide a wide range of emotional and spiritual support to family members not available in other settings.
To help families, hospice care also provides counseling, respite care and practical support.
Unlike other medical care, the focus of hospice care isn’t to cure the underlying disease.
The goal is to support the highest quality of life possible for whatever time remains.
“It’s tremendously helpful when families have talked about death and dying ahead of time — it takes some of the taboo out of that subject,” said Dworaczyk. “It helps the folks who are remaining to know they acted in accordance with a patient’s wishes.”
Eating ice cream for breakfast
Opting for hospice at the end of life is a personal choice, added Bengston. But it is important people fully understand the benefits it offers in terms of making informed decisions.
“Hospice remains misunderstood,” she said. “Collectively, we hate to talk about death because it taps into a profound and universal fear of the unknown. It signals defeat and failure. We stretch the limits of technology with medical overtreatment and often futile care. But sometimes extending medical care at the end of life can contribute to suffering.
“Many times, people don’t know about the benefits of hospice or how to access it until the very end of life when it may be too late to make the necessary arrangements for the patient’s wishes to be carried out.”
Talk about death with your loved ones — it’s a normal part of life, stresses Crawford. That can help minimize future fear, pain and anxiety.
And by all means, take time to enjoy the people you care about.
“We’ve seen what people go through at the end of life, we really have,” said Koliche. “That has made the bond with our own friends and families stronger. Make an effort to get together, spend more time together, and it’s OK to eat ice cream for breakfast.”
Hospice work a calling
While outsiders may view hospice work as a string of sad stories, those in the profession beg to differ. Some consider it a calling.
“Birth involves a lot of work for the mother and baby,” said Koliche. “In death, it can also take a lot of work to leave — it can be uncomfortable and laboring. We call that transition — it’s like the birthing process. I have attended a few births and the parallels with the dying are amazing. There is uplifting energy in both.”
Education surrounding death is key, said Dworaczyk, because there is very little discussion of death in our culture. Make a plan, create an advance directive.
“Death can freak people out — especially the idea of someone dying in their living room, bedroom or down the hall,” she said. “They wonder, can they handle it? What will it look like? If they’re prepared, it will alleviate a lot of stress and anxiety.”
It’s a privilege to be part of a person’s final days, hours or minutes, Dworaczyk added.
Alleviating suffering and making it possible for patients to die in peace and dignity at home surrounded by loved ones is very rewarding.
“You walk into these ‘perfect’ family situations and there is such a state of grace and reverence — you realize you’re in a sacred space,” she said. “A family sitting vigil — it’s just beautiful.”
To contact Staff Writer Cory Fisher, email her at Cory@theunion.com or call 530-477-4203.
“What strikes me is that even those ill-equipped or unfamiliar with death step up to the occasion in such a beautiful way.”
medical social work supervisor for Hospice of the Foothills