Hospice: What You Don't Know Can Hurt - page 3

I took a seat on the kitchen chair that the daughter brought in. Pulling it up to the double bed, I tried to get close to my patient, a woman nearing the end of her battle with gastric cancer. She... Read More

  1. by   jeastridge
    Quote from lindacampy
    My family experienced the gift of hospice for three months after my mother's terminal illness reached the point where quality of life rather than quantity of life became the paramount objective. It was an extraordinary experience. Out of profound gratitude, I now find myself on a personal mission to spread the word so that more families seek or welcome this option, one that makes the unbearable bearable not only for the dying patient, but also for her family. I have written articles and op-eds, given speeches, and even testified by invitation before my state's legislature (which was considering an assisted suicide bill). It saddens and upsets me that too many people don't know what hospice is, and just as many think it is something it isn't.

    Your article, Joy, is one of the most compelling, truthful, and helpful pieces of writing on this topic that I've come across -- and I have read many! I applaud you for trying to correct misconceptions that cause too many patients or their family members to reject rather than embrace hospice. I have the deepest respect for you and all people who devote their careers (and give their hearts) to work in hospice; and my appreciation for the hospice team that guided and loved my mother and our family is abundant and abiding.

    After my mom's death in 2009, my grief found expression on the pages of what became a memoir about our last year together, and a good portion of it is devoted to our amazing experience with hospice, including the volunteers who made such a huge difference. I invite you to explore my web site, where you'll find information about my story and also links to other things I've written as a grieving-grateful-daughter-turned-passionate-advocate-for-compassionate-end-of-life care! (When All That's Left of Me Is Love |). And for quicker reference, here are two articles that may be particularly resonant and potentially helpful: "Embrace hospice as a guide on the journey through terminal illness" (Embrace hospice as a guide on the journey through terminal illness) and "Why are we in denial about death?" (Why Are We in Denial About Death? | The Caregiver Space).

    Thank you again, Joy, for your article and for what you do.
    Thank you, Lindacampy, for your kind comments. I am glad that the article was helpful and I appreciate people like you who continue to spread the good word about hospice and how hospice can help bring meaning, focus and comfort at the end of life. I look forward to reading your website and appreciate you sending the links along to all of us. Joy
  2. by   rosemiller
    Thanks for sharing!
  3. by   ComfortCare4all
    You sound like a very wise and compassionate nurse. I have adopted a similar approach with my hospice patients and their caregivers. So often people feel like everyone has 'given up' and nothing else will be done. It is just like you said, there's plenty of things to do but the focus changes. Some days are extremely hard, long and sad but others are so filled with love, sweetness and happiness. I'm a nurse with 28 yrs experience, I've worked in various areas of nursing with approximately 7 yrs in critical care prior to the greater than 16 yrs in hospice care. Hospice care has my heart and is my love. There is nothing like being able to be a part of someone's last part of their journey her on earth. It is a privilege to be there.
  4. by   jeastridge
    Quote from ComfortCare4all
    You sound like a very wise and compassionate nurse. I have adopted a similar approach with my hospice patients and their caregivers. So often people feel like everyone has 'given up' and nothing else will be done. It is just like you said, there's plenty of things to do but the focus changes. Some days are extremely hard, long and sad but others are so filled with love, sweetness and happiness. I'm a nurse with 28 yrs experience, I've worked in various areas of nursing with approximately 7 yrs in critical care prior to the greater than 16 yrs in hospice care. Hospice care has my heart and is my love. There is nothing like being able to be a part of someone's last part of their journey her on earth. It is a privilege to be there.
    Dear ComfortCare4all, Thank you very much for sharing your thoughts and for your kind comments. I applaud your work in the field and am so glad that you find long term fulfillment in it. It is indeed a privilege. May your love for providing this much needed care continue to multiply! Joy
  5. by   geraldine1972
    My mom has been in nursing home for about six months. I am very concerned that hospice is widening the net, drawing more and more nursing home residents into a situation they don't fully understand. I decided to watch closely after they put a "oxygen in use" sign on my mom's door. Now the oxygen tank sits in the bathroom, my mom is not on oxygen now. So i decided to keep a eye on how many "oxygen in use signs" were in the nursing home and how many new ones were coming up. To my shock and dismay one day i passed a hall of about 12 rooms. All 12 with the exception of one or two had "oxygen in use signs" on the doors. This was all within the matter of a few days! Then a state inspection came in, the signs were gone. I ask the director of nurses what those signs were put up on so many doors in that one wing, she said to me "not all the doors in the building have those signs" but that is not what i ask her! I ask her why those signs were up in the first place in such a numerous situation! She said that the nurses had good reasons for that which she would not share with me. So why, was their a contagious disease, what and only on that wing? Hospice companies are popping up like weeds. the net is wide and they are not upfront that if a patient becomes ill, they cannot go to hospital to get better. They will be dying and hospice claims they will make them comfortable doing so...
  6. by   jeastridge
    Quote from geraldine1972
    My mom has been in nursing home for about six months. I am very concerned that hospice is widening the net, drawing more and more nursing home residents into a situation they don't fully understand. I decided to watch closely after they put a "oxygen in use" sign on my mom's door. Now the oxygen tank sits in the bathroom, my mom is not on oxygen now. So i decided to keep a eye on how many "oxygen in use signs" were in the nursing home and how many new ones were coming up. To my shock and dismay one day i passed a hall of about 12 rooms. All 12 with the exception of one or two had "oxygen in use signs" on the doors. This was all within the matter of a few days! Then a state inspection came in, the signs were gone. I ask the director of nurses what those signs were put up on so many doors in that one wing, she said to me "not all the doors in the building have those signs" but that is not what i ask her! I ask her why those signs were up in the first place in such a numerous situation! She said that the nurses had good reasons for that which she would not share with me. So why, was their a contagious disease, what and only on that wing? Hospice companies are popping up like weeds. the net is wide and they are not upfront that if a patient becomes ill, they cannot go to hospital to get better. They will be dying and hospice claims they will make them comfortable doing so...
    I'm really not sure what the "oxygen in use" signs were all about and I'm not sure it relates to hospice. What I hear you saying is that you are concerned that there might be some pressure on patients and families to go into hospice. I guess I see it more as one of many choices patients and their families can pursue at the end of life. Part of the admission process includes detailed disclosure of what is involved in hospice, including the fact that it is focused on helping the patient stay "home" (even if home is a nursing home during this time). I hope your mom does well and that your caregiving for her is a source of great joy to you.
  7. by   CryandNurseOn
    I had a friend whose husband passed away in hospice care last summer. The ability it gave her to just spend quality time with him and their kids was such a gift. I know she wanted to do his end of life care initially but in the end decided to let hospice care do it. Helping families understand their options and balance medication and goals I'm sure it challenging, but makes those precious last months so different for the families. Thank you for the work you do.
  8. by   jeastridge
    Quote from CryandNurseOn
    I had a friend whose husband passed away in hospice care last summer. The ability it gave her to just spend quality time with him and their kids was such a gift. I know she wanted to do his end of life care initially but in the end decided to let hospice care do it. Helping families understand their options and balance medication and goals I'm sure it challenging, but makes those precious last months so different for the families. Thank you for the work you do.
    You are so right. Having hospice can let a spouse just be the spouse, not the full-time nurse. It can also share the burden of responsibility for making decisions about medication and other questions that come up along the way. Have a blessed day, Joy
  9. by   Harley's mom
    I enjoyed the story immensely. As of today I accepted a position in hospice after many many years in the ED. I have so much to learn about my new area of nursing but am excited and feel honored to be part of families lives during difficult times.
  10. by   jeastridge
    Quote from Harley's mom
    I enjoyed the story immensely. As of today I accepted a position in hospice after many many years in the ED. I have so much to learn about my new area of nursing but am excited and feel honored to be part of families lives during difficult times.
    Happy to have your working in the field! I know you will be an asset to the team you work with.Congratulations! Joy
  11. by   suseliz
    "Having hospice can let a spouse just be the spouse, not the full-time nurse."

    My husband died two months ago from bile duct cancer. He had been suffering from fatigue 6 months previous to that and not letting on how really terrible he was feeling. His symptoms came to full flower on February 3 and he died on March 23. Seven weeks. During that time I nursed him round the clock. By then, his profound fatigue turned into weakness, no appetite, massive edema, and ascites. His liver had failed and he was in renal failure. We had a week of tests and were told liver cancer. We were referred to a cancer center and were told they would get to us and were unconcerned about how sick he was. He would no longer eat, and was too weak to do any self care. He was hospitalized in our local hospital after a hemorrhoidal bleeding scare. During that overnight stay, he had a paracentesis which removed 6 liters of fluid. He initially felt better, but by the end of the week, he was terrible. The local hospital wondered if he met criteria for admission (just thinking weakness) and did not encourage bringing him back to the ER. However he became so weak I could hardly care for him at home and fluid reaccumulated in his abdomen. We went back to the ER and he was admitted to the specialty hospital. By the end of the week, we were told it was bile duct cancer. He was discharged too weak to even get himself into the car for the drive home. His oncology appointment was pending. After 5 difficult days at home and another belly tap, he was back in the local hospital. We saw the oncologist the day before he was discharged who recommended hospice. The hospice consultant told me that hospice would allow me to be his wife, not just his caregiver. Fat chance, I was too busy with round the clock care. I would have given any amount of money the night he died for a suction machine to get the secretions out of his throat. I had to struggle with my 300 pound husband when he became agitated and could no longer follow commands. Luckily I had my adult son who is also a physician to help me the last week he was alive. The best thing about hospice was they home delivered the meds, the staff was supportive (but did not make it possible for me to be anything but his caregiver), and I only had to make one phone call when he died.

    I am am so very grateful for 20 years of hospital experience and 20 years of advanced practice nursing. My husband received excellent nursing care from me as I navigated our broken and disconnected health care system. But no, I did not get to be his wife when he was dying.
    Last edit by suseliz on May 24, '16 : Reason: Awkward sentence
  12. by   jeastridge
    Dear Suseliz, Please accept my sincere sympathy on the loss of your husband. What you describe is the stuff of nightmares and your sentence "navigated our broken and disconnected health care system" rings with sad truth. I am so sorry. Praying for comfort and peace for you and your family. Joy
  13. by   LVN fresno
    Hospice is a service that really helps both the patient and the family. Hospice helped me care for my mother. I no longer had to take her to see the doctor and medications were delivered to the house along with dressing supplies and every thing needed to care for her. I will never forget how much they helped.

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