Hospice Care Doesn’t Have To Be Sad

June 13, 2012 at 11:40 am , by

 

When we decided to do an article about hospice care for the July issue, we learned so much—most notably how empowering it can be for patients navigating their final days. ”I had several friends who had used hospice when a loved one was dying,” says Julie Bain, LHJ’s health director. “They all told me it was one of the best decisions they’d ever made and provided so much comfort and peace at an incredibly difficult time.” That’s why we decided to create a photo essay showing what it’s like to be a hospice nurse, caring for patients who want to die as comfortably as possible in their own homes. (That’s nurse Jill Campbell, above, of Gilchrist Hospice Care in Baltimore, which recently won an award from the American Hospital Association for its innovative care.)

• COSTS ARE COVERED
When hospice care started to become available in the United States in the 1970s, it was mostly for end-stage cancer patients. While cancer diagnoses still account for a third of hospice admissions, people with other terminal diseases such as heart disease and dementia now make up the majority, according to the National Hospice and Palliative Care Organization. We were surprised to learn that everyone’s entitled to end-of-life care, whether you have the ability to pay or not. The costs are usually covered by insurance plans, Medicare or Medicaid.

• BUT MANY PATIENTS WAIT UNTIL IT’S TOO LATE
The use of hospice services is on the rise, but some people still think of it as giving up. As a result, more than a third of hospice patients don’t start palliative care until they have just days left to live. “People are so afraid to make the decision. But when you decide to get all the hospice supports earlier on, like Linda Schuberth (one of the patients in our story) did, you can make that limited time so much better,” says Diana K. Sugg, the Pulitzer Prize-winning writer we tapped to follow Campbell for our story. Sugg worked closely with Pulitzer-winning photographer Monica Lopossay to capture the heartwarming and poignant images.

• IT HELPS THE FAMILY TO PREPARE AND ACCEPT
This was a special story to our staffers who have personal experience with hospice care. Assistant editor Amelia Harnish was only 15 years old when her dad was diagnosed with hepatitis C. Four years later, her family chose hospice when other treatments failed. “The scariest part was the night that he died,” she recalls. “You’re never prepared for something like that, and at the time, I was barely 20 years old. The hospice nurse was there to explain to us what was happening, and to make sure he wasn’t in pain. Without that sense of comfort, I don’t know how my family could have handled it.”

• IT KEEPS PATIENTS COMFORTABLE AND PAIN-FREE
For senior editor and digital director Amanda Wolfe, the decision to place her mother in hospice care at the end of her battle with ovarian cancer (which she chronicled for LHJ here) was difficult, but worth it. “I really believe that hospice is a gift to both the dying person and their family: My mother passed away in her home, surrounded by her daughters, and in the least amount of pain. Hospice made it possible for her to die in peace,” Wolfe says.

• IT PROVIDES EMOTIONAL AND SPIRITUAL COMFORT, TOO
When photo associate Vivette Porges also lost her mother to ovarian cancer last year, she had a team of hospice workers at her side—counselors, psychiatrists, even a rabbi—but her mother’s nurse Debra Fox was at the center of it all. “She knew exactly what to say and when to say it. She was an excellent listener and made it clear that we could lean on her 24/7. She coordinated everything,” Porges says.

TELL US YOUR STORIES ABOUT HOSPICE
Our story has touched a nerve, and many people have shared it on Facebook and written thoughts about their own experiences with hospice. We hope you’ll read our story “It Doesn’t Have To Be Sad,” think about it and discuss your own wishes with your loved ones. And please leave a comment if you have any thoughts you’d like to share with others.

Photo by Monica Lopossay

17 Responses to “Hospice Care Doesn’t Have To Be Sad”

  1. I remember a patient’s daughter saying to me, “He was so afraid to die before he met you, you truly are God sent”. I remember thinking, funny, I thought God sent him to me.


  2. Being a part of this article has been an amazing experience & the response has been overwhelming. I thank every person who has read & shared. It is my hope that this article will reach families struggling with the decision to seek hospice care and open the eyes of doctors who resist referring patients to hospice “too early”.


  3. As a former Hospice employee, I can personally attest that Hospice can be a God-send for the patients and their families.

    I was disappointed however that your article made no mention of the countless Certified Nurses Aides that provide care for the sick and the dying every day. CNA’s are the heart and soul of hospice. They provide the most personal of care, feeding, bathing, lifting and companionship for those that need it the most.

    CNA’s are the eyes and ears and sometimes even the advocates for their patients.

    Hospice would not be hospice without the kindness and compassion of these Angels on Earth.


  4. Jane, thank you for your point about certified nurses aides. You’re so right. We were aware of this when we were planning our story but decided we wanted to tell the story through the eyes of one person, and we had already decided that person was Jill Campbell. But kudos to all the kind and compassionate people working in hospice care. I’m in awe of every single one of them.


  5. [...] saw this fantastic article by Allison Berry on Ladies Home Journal and wanted to share. The article, titled, “Hospice Care Doesn’t Have to be Sad” outlines 5 good reasons why anyone [...]


  6. After reading this article I felt I really wanted to share my experence. Just over two years ago in a hospital room I held the hand of my close friend David while he sqeezed and grimaced thru the pain until I felt him finally let go and pass on. Even thu he had terminal cancer he didn’t push to put his ending plans in place. Then a year ago I received the call that my father was doing very poorly and facing death. I flew out to be by his side and my sister and I worked at putting hospice in place. He was excepted and God allowed us an unexpected year to share with him. When he was called home a few weeks ago it was in a bedroom at Tenenbaum Villa, a family style eldercare facitity, with his favorite music playing and my sister and I reading him the stories he read us at bedtime long ago. Thanks to our support from hospice he was not in pain and we were prepared to help him make his journey a pleasent and beautiful one. Words truley can’t describe the difference hospice made to me. I just thank God they exist and thank everyone involved in them.


  7. Thank you for publishing such a wonderful story. It’s our hope that more articles like this can help change the myths and fears that exist about hospice care.

    We believe it is an honor to be asked by a family to care for their loved one at the end of life. We know it’s a powerful time and experience, and as hospice professionals, we seek to guide patients and loved ones through it with as much comfort, respect, and dignity as possible.

    Casa de la Luz Hospice, Tucson, Ariz.


  8. I have to admit I am one of those that did not have much knowledge of what hospice was or does. 6yrs ago my father was diagnosed with liver/colon cancer and chose hospice after much investigation. We were able to keep him home and my sister and I spent his last day by his side, giving him his “Bahama Mama” (that’s what we called his pain med that we had to put in his cheek!) Even tho he couldn’t talk, you could see the smile in his eyes when we would say it was “Bahama Mama time”
    I now work for that same hospice (but in another city) and it is the BEST place to work. You would be amazed that 99.9% of our employees feel the same way. I felt that I was reading one of our stories while I was reading about Jill.
    And you are right, Hospice is not a death sentence but a blessing for all involved


  9. I was sitting at lunch today flipping through the magazine when I came across this article. As a health care provider I was intrigued and took the time to read it. As fate would have it 4 hours later my mom called me telling me she was debating putting my grandfather in hospice but knew her sister would not take it well. Thanks to this article I was able to tell her what a wonderful opportunity this could be for him and us as a family to enjoy the time he had left. She passed the word to my aunt who immediately wanted to know where I had read this article. As a nurse herself I think it meant a lot to hear genuine advise from a fellow nurse. I think its wonderful for people to take time out to help people.


  10. [...] hospice isn’t just for cancer patients. According to a behind-the-scenes article about the piece: When hospice care started to become available in the United States in the 1970s, [...]


  11. Thank you for sharing the beauty of hospice. Those who provide this incredibly important care are amazing professionals. The entire hospice team works together to support patients and their families at one of the most difficult times for a family. My husband did not have hospice care. After months of chemotherapy in which the treatment seemed worse than the alternative, the prostate cancer won. His doctor informed me one hour before he died that we were going to lose him that day in the hospital. But I already knew that. Why didn’t the doctor refer us to hospice? That experience is what compelled me to work in the hospice field. I have learned so much from people who are at the end of their lives.


  12. As the Director of Volunteer Services for Silverado Hospice in Orange County CA for the past eight years, I can attest to the wonderful work that all the members of the hospice team does for our patients and families. Volunteers are also an integral part of the hospice care team and spend countless hours giving of themselves with no other reward except rewards of the heart. Hospice is not about death. Hospice is about LIFE!


  13. Excellent article. Well written. Is this article in
    it’s entirety?
    Thank you
    Cheryl


  14. You are absolutely right. In it something is also to me it seems it is good thought. I agree with you.

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  15. [...] Click here to read the full article! Share this:TwitterFacebookLike this:Like Loading… [...]


  16. This is Julie, the health editor for Ladies’ Home Journal. Sorry about the confusion. This is just my blog about what I learned while working on our Hospice Nurse story for the magazine. You can find the actual (award-winning, if I do say so myself) story here:
    http://www.lhj.com/community/your-stories/hospice-nurse/


  17. Nice Blog
    My father has a very deep experience of hospice care.he was very comfortable with it.