A totem stands outside the former Hospice and Home Care of Juneau on Oct 14, 2022. The facility shut down days later after providing services for about 20 years. (Mark Sabbatini / Juneau Empire)

A totem stands outside the former Hospice and Home Care of Juneau on Oct 14, 2022. The facility shut down days later after providing services for about 20 years. (Mark Sabbatini / Juneau Empire)

My Turn: Ongoing lack of hospice care complicates matters of life and death

“Don’t it always seem to go, that you don’t know what you’ve got ‘til it’s gone?”

– Joni Mitchell

Last September Juneau’s Hospice and Home Care closed its doors. Catholic Community Services ran this vital program for 20 years until the nationwide shortage of health care workers, exacerbated by the pandemic, increased operational costs to the extent that CCS found it economically unsustainable.

I took note of the regrettable news, feeling confident at the time that one of our major health care entities (i.e. Bartlett or SEARHC) would step up to the plate and provide continuity for this critical facet of health care in our community.

Little did I imagine that eight months later I would be personally impacted by the program’s continued absence.

If you haven’t had personal experience with end of life care provided by hospice, perhaps you have at least read the repeated glowing praise for its existence in obituaries. The kudos are with good reason.

Hospice care provides an alternative for those individuals with a terminal illness who have been given a doctor’s prognosis of having six months or less to live and want to die at home. The hospice team provides expert medical care, pain management, and emotional support for the patient and their loved ones. Interwoven with intuition and compassion, this type of care is an art form.

Although people may benefit from a longer relationship with hospice during the end of life process, many hook up with the program only shortly before death. Such would have been the scenario with my friend who in mid May very sadly informed me of the news that he was diagnosed with Stage IV lung cancer with a prognosis of at most a couple of weeks to live. His breathing had become a painful and at times an anxiety-ridden process even with his home oxygen unit. He stated to me that he was ready to die and his adamant wish was to die at home. (Bartlett Regional made clear to my friend that he could be admitted to the hospital for palliative care, but he declined this option.)

He lived alone and his closest family was thousands of miles away.

His condition quickly worsened, experiencing increased difficulty breathing, and considerable pain and discomfort. It became clear that his daytime visitors would need to ramp up to an around-the-clock presence to provide him with the company and care he needed. Hastily, a schedule was cobbled together that comprised three volunteers supported by two CNAs who gratefully were available on very short notice.

Above and beyond their regular services, SEARHC’s Front Street Clinic staff made several home visits prescribing increased pain medications and providing a crash course to us volunteers on administering liquid morphine, applying fentanyl and lidocaine patches, and monitoring the oxygen flow of the home concentrator, as well as any number of tasks involved in making our friend as comfortable as possible.

Although following these medication instructions may sound straightforward, I assure you that administering morphine to an individual in pain who is struggling to breathe is not. I will always wonder if with the benefit of experience I could have provided more comfort to him.

Several days later, within an hour of this man’s sister arriving from back east to be at his side, he drew his last labored breath.

The Juneau Empire reported last October that Bartlett Regional Hospital planned to take over services and had begun the arduous process of applying for the appropriate state licenses. At that time, the BRH CEO stated that the licensing process could take 30 to 90 days. In early December, a hospital spokesperson thought they would get their license in two to three months, with the caveat that it may require lengthier timelines for implementation. Now six months later, the BRH website promises hospice is “Coming Soon!” with no specific timeline.

After having this experience I feel confident that I am not the only one who needs to be reassured that reinstatement of this important program does not experience continued delays. We owe it to those whose desire it is to die pain free and with dignity at home, as well as to their friends and families.

• Laura Lucas is a retired social worker who has worked with seniors, people with disabilities and Juneauites experiencing homelessness.

More in Opinion

Have something to say?

Here’s how to add your voice to the conversation.

(Juneau Empire file photo)
Letter: Legislature will best serve Alaskans by rejecting Dunleavy’s executive orders

Dunleavy’s executive orders have nothing to do with “streamlining” and everything to… Continue reading

Students enter a bus stopped on Douglas Highway during the first day of the 2023-2024 school year. (Clarise Larson / Juneau Empire file photo)
My Turn: Unintended consequences of the school district reorganization plan

During school board public comment sessions on proposed school reorganization options, many… Continue reading

Former President Donald Trump speaks to a capacity crowd at the Alaska Airlines Center in Anchorage on July 9, 2022. (Mark Sabbatini / Juneau Empire file photo)
Opinion: A primary election of ill-informed voters

On Tuesday, Republicans across the state will help anoint Donald Trump as… Continue reading

HEX Cook Inlet, LLC and Subsidiaries presents a check to the Alaska Industrial Development and Export Administration in October of 2023. (Photo courtesy of the Alaska Industrial Development and Export Administration)
My Turn: The Legislature should rein in AIDEA

This story has been updated to correct the photo caption, which originally… Continue reading

(Juneau Empire file photo)
Letter: What’s wrong with this picture?

At 1:30 p.m. Wednesday, Jan. 24, I and several other moms and… Continue reading

Palestinians sell goods next to buildings destroyed by an Israeli airstrike in Rafah, Gaza Strip, Wednesday, Feb. 21, 2024. An estimated 1.5 million Palestinians displaced by the war took refuge in Rafahor, which is likely Israel’s next focus in its war against Hamas. (AP Photo/Fatima Shbair)
My Turn: Palestinian residents are helpless victims in attacks made by leaders

In 1948 the United Nations gave the country of Palestine to European… Continue reading

The Juneau School District administrative office, which would be closed and turned over to Juneau’s municipal government under a pending consolidation plan. (City and Borough of Juneau photo)
Opinion: Juneau School District edges closer to balanced budget, but what’s next?

After a marathon public hearing last week, the Juneau School District (JSD)… Continue reading

Students at Juneau Community Charter School play chess in a classroom. (Juneau School District photo)
Opinion: Final Draft – Civic education and the problem with standardized testing

There’s a lot of intense disagreements with the education bill that the… Continue reading

Most Read