The Final Goodbye: Giving comfort and guidance at life's end

A KMBZ Cover Story

KMBZ News Staff
May 17, 2018 - 6:03 am
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The end of life is a subject few like to think about and many fear. 

Our Cover Story, The Final Goodbye, was inspired by former First Lady Barbara Bush's decision to transition into comfort care and to stop curative care.

 

- The story of Clayton and her family in her last days - 

The hardest times are still to come for Clayton Hasser, her daughter Sarah and her son, Chris.

"The treatment that I was taking for stage four lung cancer was no longer working, and the options for further treatment weren't very good ones, and I opted not to continue treatment, and went on hospice," Clayton said.

When E.J. and Ellen visited with Clayton, they were surprised to see how healthy she looked. It is not uncommon for people to go on hospice when they still have months to go, so they can get a handle on their end-of-life symptoms before they become more difficult to manage.

 

Clayton is in her mid-70s, a retired medical publisher and an active church member. 

"I've never broken down and cried," she said. "I haven't pounded on the walls, I've gone through the ups, I've going through a stage of depression. Right now I think I've hit acceptance."

Acceptance may have come more easily to Clayton because she has contemplated her mortality before.

"I've had cancer once before, I had breast cancer in the early 80s," Clayton said. "I was a dedicated smoker for many years, so I couldn't be terribly surprised.

Clayton went into hospice care on the advice of her physician and her daughter. She wanted to take control of her situation. One of the first questions she was asked at hospice was about her fears, the most obvious of which was pain. The nurses told her they wouldn't allow her to experience pain.

"I believe that -- I also know that there is a threshold where you won't be in pain but they'll be gently be pushing you to the other side because of the strength of the medication," Clayton said. "I'm not fearful of that."

Clayton went into hospice care a few weeks ago, knowing she has only weeks or months to live.

 

- Providing comfort for the dying -

The life of a hospice nurse may seam frightening or depressing because they spend so much time around people who are dying, but the people who provide end-of-life care find their careers to be very fulfilling.

"Our goal is to make it a meaningful experience, because we're all going to die and we're only going to do it once," said Lauren Buckles, a nurse who practices at St. Luke's Hospice House in Kansas City.

The staff at the hospice facility help manage physical and emotional pain for patients and their loved ones. Hospice care sounds scary to a lot of people, but it can be a positive, peaceful experience. But that does not mean there are no difficult times, with emotions that include fear, anxiety and anger.

"People are angry about a diagnosis, angry about their situation, feeling numb about their situation, being kind of blindsided," Buckles said.

St. Luke's takes an interdisciplinary approach to make the end of life as comfortable and meaningful as possible. One common misconception is that the nurses simply knock people out with drugs so they won't feel anything. Rather, when possible, they manage pain in a way that allows patients to remain lucid and involved. 

There are two basic levels of hospice care. Patients are treated at their homes unless and until symptoms require round-the-clock care or intravenous medication. 

In her time as a hospice nurse, Lauren has witnessed some truly life-affirming moments as a patient approaches the end. Many cases allow people to pass away with no pain at all.

"We try to really cherish and respect the time that people have left, so we have lots of really beautiful moments," Buckles said. "We've had weddings, we've had birthday parties, we've had anniversaries."

 

- A spiritual calling to aid people at the end of their lives -  

Mary Linda McDonald is a hospice chaplain at Good Shepherd Hospice in Independence she tries to help patients with their spiritual needs.

"I basically go and I hang out with people," McDonald said. "I just kind of listen and contribute and try to draw out their concerns, and just be there with them, really."

McDonald's philosophy comes from a lesson she learned in seminary, to be a blessing to those she serves. She and the others at Good Shepherd have a close bond that comes from helping each other through difficult moments.

"You've got a whole organization that truly cares about the family and the patient," McDonald said. "We meet periodically and talk about what we can do better to be helpful and beneficial at the end of life."

McDonald has noticed a common thread with the end of life, reconciliation.

"It's wonderful at the end of life because it usually brings a whole bunch of people together," McDonald said. "They decide, well, we're going to stay closer than we've been, because we've got such a hectic pace in this world of ours now, that friends and families can kind of drift apart."

People do not realize the value of hospice care until they experience it, McDonald said. 

"We get cards all the time that are so affirmative of what we do," she said.

 

- End of life care becomes personal for an experienced provider - 

Talking about the subject of ones mortality is something most people would rather avoid, even people who death with end of life issues on a daily basis.

Caryn Hohnholt, the Vice President of Development at Kansas City Hospice & Palliative Care, said she was guilty of that avoidance when her sister went through hospice.

Caryn lost her sister, Cindy to pancreatic cancer in March.

"My sister wanted to talk about (her mortality) -- she wanted to have that conversation," Caryn said. "Part of it, I think, is overcoming that discomfort."

Cindy was diagnosed with cancer last October. She died after a little more than a week in hospice.

"I think my sister stayed on treatment, probably for longer than she needed to," Caryn remembers. "Had we brought her over earlier, she would have had more pain management, probably better quality of life."

Sometimes, Caryn said, making the decision to go on hospice takes a lot of soul searching and discussion before everyone agrees. 

"Certainly, I think some of us arrive sooner than others, but toward the end, we were all on board and started to recognize what a difference it made for us," Caryn said.

 

- The end of life and what lies beyond - 

As Clayton Hasser  approaches the end, she worries little, except for the thought that her son in California may not make it on time to see her.

Her children, Chris and Sarah, are dealing with her death, too. Chris says he gets a lot out of going through boxes of old letters with his mother, reading about family history and reminiscing.

"You feel like, okay, the person's dying and you should have every single second you should cherish," Chris said. "But she's tired and needs to take a nap, or you need to go to the store and get something. It's a balance of the mundane and the special." 

Clayton said she is a Christian who tends to favor a practical, progressive side of the religion. She does not fear death, even though she said she does not know what awaits her on the other side.

"I would like to think it's not just nothingness," she said. "And at the most, we just sort of merge into some God-like oneness."

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