‘Don’t sweat the small stuff’: hospice workers share 12 lessons about life and death

"Hospice" can be a loaded term. Some see it as synonymous with death and "giving up", as Courtney, a full-time hospice nurse practitioner in Missouri, puts it. But Courtney, who asked that her last name be withheld for privacy reasons, doesn't see it that way.

"Hospice is giving someone a gift," she says of her patients, who have typically received a terminal diagnosis with a timeline of six months or less. "It is giving them the gift of being able to stay at home and eat or not eat whatever they want. It is the gift of comfort."

Courtney first started working with dying patients when she was an oncology nurse. Patients would come to her from the intensive care unit (ICU) or other areas of the hospital when they had a limited time to live and were on comfort measures only – a medical term for care that focuses on relieving pain and distress rather than prolonging life.

"I fell in love with it," says Courtney. She loved getting the rooms ready, dimming the lights, and creating a gentle, pleasant atmosphere for the patient and their families to say their goodbyes.

After a brief stint working in the ICU, Courtney began working in hospice care full-time. She says her job has reshaped how she approaches her life both personally and professionally. We spoke to her and other hospice and end-of-life workers about what they've learned from their work and their patients.

Have open conversations about death

"The best way to have a good death experience for all involved is to be able to have conversations about it with your loved ones," says Penny Smith, a recently retired hospice nurse of 20 years who lives in Washington state.

People are often reluctant to discuss death, experts say, either because they are worried about upsetting their loved ones or because of superstition.

"People think that talking about [death] is going to make it happen faster," says Dr Luyi Kathy Zhang, director of the palliative care serenity unit at Bellevue hospital in New York City. "It seems silly when you say it out loud, but it is a real fear people have because the topic is so uncomfortable."

But open dialogue "ensures that your end of life wishes are met", says Smith, whether it's what music you'd like to listen to when you're dying, or whom you would like to be in the room.

Death can be beautiful

Death often brings up painful feelings like fear, loss and discomfort. But Courtney says it can be a beautiful experience as well.

"That's something we get to see with hospice. Someone dying at home, surrounded by loved ones, listening to music and sharing stories," she says.

"Death can be sad," agrees Zhang. "But there's so much beauty in being able to witness the amount of love and devotion between people which gets magnified at the end of life."

Don't wait to check off items on your 'bucket list'

Too often, we put off our goals and dreams indefinitely, figuring we'll get to them when we have more time, more money, more energy. But our time is not infinite, hospice workers emphasize.

"So many of my patients waited to take the vacation of their lifetime and were never able to," says Smith.

Zhang hears lots of patients talk about how they regret not following their dreams or pursuing what they wanted because of fear of judgment, risk and the unknown.

"We all think that we're going to live to 80, 90 or 100, but that's not the case for everyone," she says. "Just go for things."

Know what you can control

Working with death highlights how little of life is in our control, says Courtney.

"I cannot control what is happening in somebody's body," she says. "I can't control cancer, I can't control COPD [chronic obstructive pulmonary disease], I can't control any of those things."

But knowing what is outside our control can make more clear what is in our control.

"By the time someone gets to be my patient, I can't control those other things they have going on, but what I can control is making sure that they have their wishes honored, that their loved ones are cared for," Courtney says. "I can ensure they have dignity, and that their death is a phenomenal, beautiful thing."

Nurture relationships

"A lot of people are alone at the end of life for one reason or another," says Zhang.

Many of Zhang's patients tell her about people they miss or friends they regret losing touch with.

Seeing this, she says, has made her more intentional about cultivating the relationships in her life. She tells herself: "'I am going to be the one to reach out and try to have a meetup. And if people aren't reaching out to me, I'll be the one to do it, because it's important to me."

Keep things in perspective

Put differently: "Don't sweat the small stuff," says Courtney.

When she's stuck in traffic or dealing with minor inconveniences, Courtney says she tells herself: "If I'm fortunate enough to live to be 80 years old or I'm on my deathbed, I'm not going to be thinking about this."

Be present

Zhang says the greatest lesson she has taken from her work in end-of-life care is "being present, and taking advantage of and being grateful for the life I have".

Before joining this field, Zhang says she was always wondering about the next thing she had to do or achieve. This isn't necessarily a bad idea, she says, but it led her to neglect where she was at that moment.

"I'm so much more grateful for the little things – even waking up and being able to enjoy coffee," she says.

Everyone is someone's favorite person

This reminder from a colleague years ago changed the way Courtney worked.

"We are so used to compartmentalizing death," she says. "But when we step into that room, that isn't just Mr Johnson – it's also Sara's dad."

This can help you remember that other people are human, and make you feel more patient and generous, even if someone is cutting you off in traffic.

A job is just a job

Courtney considers hospice work her passion. But even so, her patients remind her all the time that a job is just a job, and that there is more to life.

"Even though it's meaningful, we have to be able to leave that at the door sometimes," Courtney says.

People want to know their life mattered

When trying to comfort someone in their last moments, loved ones will often tell them that it is "OK to go". But in Smith's experience, what people really want to hear at the end of their days is that "their life had meaning and purpose".

'You laugh a little, you leak a little'

A patient said this to Courtney once, and it has stayed with her. "It was just so funny," she says: a reminder that life is delightful and messy, often at the same time.

Gone but not forgotten

This doesn't just apply to those we love the most, but also so many others, Courtney says. "There are little interactions with patients that I remember from years and years ago," she says.

"I think that's beautiful, because at the end of the day we don't get to leave much on this earth except the impact we had and what we're remembered for," she adds.

Original source ‘Don’t sweat the small stuff’: hospice workers share 12 lessons about life and death

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