The misperceptions and realities of hospice care

People who work in hospice care are often asked how they can work in a setting where most of the people around them are facing the end of their life — isn’t it “depressing”?

Put simply, hospice is end-of-life care that is both clinical and emotional in nature. It is designed to relieve suffering for the patient and his or her family during the last days of life — typically the final six months to a year. It is initiated only when curative treatments are no longer an option. Hospice workers and volunteers help their patients live their last days in peace and comfort, receiving care that meets their wishes.

For those with limited time remaining, hospice care enables them to focus on enjoying their friends and family during their final days. This is made possible with integrated clinical, emotional and spiritual support from a team of professionals. They include physicians to manage symptoms and pain; nurses who meet with patients and their families to gain a better understanding of their ongoing needs; and certified nursing assistants, including home health aides who provide hands-on care and support, as well as help with the activities associated with daily life.

Volunteer perspectives

Deana Ozuna is a hospice volunteer for Southwest Medical Hospice. She had worked for 13 years in various administrative departments in health care locally and began volunteering in hospice care in 2006. She has encountered the “isn’t it depressing?” question before, and her answer is a resounding “no.”

“I accept things as they are,” she said. “Everyone wants to be cared for. They want to be acknowledged. Connecting with people and seeing smiles on their faces just make me feel so good.”

George Pratt is also a hospice volunteer for Southwest Medical Hospice and has done so along with his wife Patricia since 2008.

“Sometimes I would agree, it can be sad, but I look at it this way — if I have reached the last chapter of my life, I’d like someone there with me. The family also needs relief from the stress and strain of the situation. The end is inevitable, whether you are there or not. Being with them at the end to give them a ray of sunshine is a good thing.”

April Stewart is the chief nursing officer for Nathan Adelson Hospice. She’s been working in hospice for 12 years. “Hospice is who I am,” she said.

Ozuna said that attitude is everything. She said one key is “the ability to be upbeat and smile when you walk into the room. They love it because they so often are around people acting somber and restrained. When I first started doing volunteer work, people were thrilled to see a smile, and they want to talk and learn about me. They are happy to have company.”

Pratt agrees, adding that “you need to be comfortable simply sitting and conversing with people. You need caring and patience.” Pratt said that he often revisits various chapters of his own life and speaks with patients on a wide range of topics. “It’s a matter of being able to listen, to show that you care.”

The job isn’t as depressing as people might think, said Stewart. “This is the most rewarding job I have ever had,” she said. “Hospice patients have the most beautiful stories to share. How lucky are we to be a part of someone’s life at this point in their journey? If we as a team can come together and provide true hospice care in the way it was intended, it is an amazing journey for all involved and can make a very sad, emotional time a little less scary.

Discovering a niche

After working in numerous hospitals and intensive care units, Dr. Dean Tsai, a medical director of hospice and palliative medicine for SMH, felt that medical care was often delivered without asking what the patient’s goals were, especially as patients got sicker and the treatments got more difficult. After helping a patient in respiratory failure to be comfortable as he was compassionately extubated, he sought out more experience in hospice care, leading to working full-time in the field in 2007 and transitioning to his job as medical director in 2008.

“It’s actually the most rewarding job I’ve ever had,” Tsai said. “We get heartfelt gratitude from families every day. Yes, it can be sad, at times, but it’s not depressing and almost always rewarding. I get to listen to patients tell their stories and often talk about what is most important in life.”

Tsai notes that the hospice setting and facing your own mortality can actually be a gift of sorts.

“Much of the time, despite the despair of dying, if one is given the fact that their time is very limited, it allows them to say their goodbyes, prepare their legacy, make amends or speak to loved ones,” he said. “This is considered the gift of hospice.”

For Dr. Lisa Rosenberg, also a medical director of hospice and palliative medicine for SMH, her first hospice experience was volunteering while a medical student. While she originally had planned to be a neonatologist, she realized her calling was for older adults. She later worked 15 years as a geriatrician, spending time with patients near the end of their lives. End of life care was always part of her work. She considers her move to hospice as the best professional decision she’s ever made.

Rosenberg has witnessed that some patients and their families can be good at emphasizing the positive or the negative, depending on their personality.

“Part of it is who we are, the other part is acceptance of the situation and accepting assistance,” Rosenberg said. “Sometimes it is a sorting through of one’s life or relationships. When someone recognizes that their time is limited, it can actually be a gift. We have resources to help with that.”

Stewart received a bit of on-the-job training when beginning her hospice career.

“These skills develop over time. The wife of my first hospice patient in 2007 told me, ‘We like you and we want you to be our nurse.’ I shared with them that I was still new to hospice so I would be in a supportive role,” Stewart said. “She then said to me, ‘If you come and care for my husband, I will show you how to be a hospice nurse.’ It turns out that she had been a hospice nurse for many years before she retired. I learned a tremendous amount from the two of them. Mainly — go into each situation with an open mind and open heart, determine what is needed of you, and make sure it happens. People don’t always need medical intervention. More often than not — they need your hand or your shoulder. Be present.”

Other misperceptions

Tsai and Rosenberg have encountered other misperceptions beyond the “depressing” question, like where the care takes place.

“Hospice is a service, not a place,” said Tsai.

While hospice care can take place in a clinical setting, a lot of hospice care takes place in the home.

“When people are enrolled in hospice, you don’t have to ‘go anywhere,’ and you aren’t necessarily bed-bound,” Rosenberg said. “The vast majority are cared for by family members at home with all the needed medications, equipment and support from our team. We continue to manage disease and symptoms. If a new symptom emerges, and a new medication is needed, we can have it in the home in less than two hours. We deliver great care and when things need to happen quickly, they happen very quickly.”

Stewart said that there is often confusion about medications in hospice.

“Some people still think that hospice just medicates people with morphine to the point that they can no longer be alert and starves them,” she said. “It is so sad and creates a lot of barriers in care. The truth is the patient is the one in charge of their care — that’s what hospice is all about.”

Rosenberg said that hospice care can take various forms. It’s about meeting the needs of patients and their families wherever they are at that point in their journey.

“If someone has stage-4 cancer and says they want to go on a cruise or go to a friend’s wedding, we can help them with these goals,” Rosenberg said. “If someone is electing to pass peacefully at home surrounded by loved ones — which is how death has happened in most of mankind’s recent history — rather than a hospital room, we support that.”

When the end comes

One particular memory has remained with Stewart.

“I once had a patient who was married to his wife for 50-plus years. When he began to transition to his final journey he said to me, ‘Please promise me one thing. I want my beautiful wife to be the last thing I see.’ I promised him I would do my best to make sure that happens. I was providing continuous bedside care.

“The time came for his wife to turn in for the night. He started to exhibit signs that he may pass. I went and got his wife and told him she was there with him. I sat him up and he was able to open his eyes as he took his last breath while holding her hands.

“It was the most beautiful expression of love I have ever seen.”

Pratt said that thinking of the good times is a good approach.

“Whenever I am with a patient, we don’t talk about the end. We talk about the journey — grandkids at the holidays, gratitude for having grandkids,” Pratt said. “One of the military service members I’ve worked with, he’s thankful he came home from the war, thankful that he married, thankful he raised a family, thankful that he traveled with his wife. You focus on the accomplishments and not the end.”

If others are encountering a similar struggle with a friend or family member with a terminal illness, he encourages them to just not give up.

“Treat them no differently than you would a friend. I’ve seen families that came together, some that pulled apart,” Pratt said. “When the whole family pulls together, that is best. It’s a team effort.”

Rosenberg said she has had hard days in her work, but most days are very good. One recurring difficulty she has witnessed is when a patient said they are tired of fighting, and a well-meaning family member said, “you have to fight.”

“That is very hard,” the doctor said. “It’s important to listen to patients, to hear their wishes for this stage of their life and to be respectful of them.”

Rosenberg sees hospice care as a return to a more natural state of care, pointing out that 150 years ago, people typically died at home surrounded by family and friends. It’s often now turned into a medical event.

“Mostly, I think what we do is beautiful. We don’t put patients on the path to dying. They let us come in and support them. We’re all in the same place working to relieve suffering and maximize joy and meaning.”

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