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Hospice: A Dream or a Nightmare

Hospice Article   (24,068 Views 22 Comments)
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In this article, a hospice nurse listens to a family member's worst hospice nightmare: making the decision to go into hospice too soon. She helps to clarify and comfort.

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Hospice: A Dream or a Nightmare

I knocked the snow off my boots before knocking on the front door of the patient's home. His daughter, Clara, opened it and with a tired smile invited me in. Her father, Harold, was in a hospital bed was right in the middle of the living room, in front of both the fireplace and the big screen TV. I could immediately see that his breathing had changed since my last visit the day before and that he was no longer responsive to our presence in the room.

Clara and I took a seat on the sofa nearby and the tears began to flow as she said, "I had a really bad dream last night. A nightmare." She hesitated and looked at me with doubtful eyes. I encouraged her to continue by asking, "Do you want to tell me about it?" I followed her gaze over at her father's lean form until the quilts, face pale and oxygen tubing snaking around to a noisy compressor in the corner.

I handed her the box of tissue as she continued, in a cramped, pained voice, "I dreamed that he wasn't dying and that we didn't know that and that we got hospice and that he was supposed to get better instead." It all came out in a burst, followed by fresh tears. "What if I have done the wrong thing? What if he was going to get better from this last urinary tract infection and now I'm letting him die?"

I took her hand and said sincerely, "I'm so glad you told me about your dream. You know, it's really important for us to talk about this. Sometimes people don't ask this question but instead try to not think about it, and it can really become difficult later."

Providing a safe place for our patients or their families to express their greatest fears while in hospice can be a gift that we share with those we serve. In modern medicine the decision points are many and the opportunity for regrets later multiply over time. Grief can become complicated, prolonged by the fears surviving loved ones have that maybe, just maybe, they should have, could have, would have done something differently.

I asked Clara some questions aimed at helping her to review her father's downward progression: the initial and progressive memory loss; the series of falls with associated emergency room visits; the loss of mobility and being confined to a wheelchair; the gradual loss of appetite with increasing difficulty in swallowing; and finally the severe urinary tract infection with the hospital stay. During his hospital stay his steep decline continued with extreme confusion, delirium and agitation. When hospice was called, he had stopped eating and was inflicting injuries on his legs as he slung them about in an effort to crawl out of bed. During all this time the daughter dutifully stayed by his side, awake for prolonged periods, trying to keep him from hurting himself. Going home with hospice help became the goal and by the time all the pieces were in place, he was beginning to slip into a coma.

I talked in general terms about dementia and the course that it often takes. Clara expressed some surprise that his constellation of symptoms were almost all related to his brain's deterioration. She said, "I guess I never really understood that the memory loss would then progress to cause all of this. In my dream it seemed like I let him die. It seemed like I could have done something to reverse it." I acknowledged her reaction by telling her, "Sometimes we know that dementia affects the mind but we forget all of the rest of the body is affected, too."

I also asked her if she would like to discuss her questions with the attending hospice physician. She said that she didn't feel like it was necessary now but was glad to have that option.After that, our conversation centered on more information about what to expect from this point forward.

How do we help families through times when they are making difficult decisions on behalf of a loved one? Here are a few points to consider:

Living in the present

Make sure the family understands that they are doing the best they know how with the information they have today. We cannot know what tomorrow holds and in making decisions we are bound by the present. We have to refrain from going back and pointing fingers of accusation at ourselves for not knowing.

Abide by their wishes

If the loved one has a living will, then it's important that we all focus our decision-making on what the patient said they wanted. As I told Clara, "You did what your dad told you he wanted. He did not want any extreme measures to prolong his life."

Plan ahead in care

It's often preferable to offer education and information before it is needed (but not in large doses). In hospice,for example, we like to have the medication we might need available in the home so that we can smoothly address needs as they arise. We also like to honestly answer questions about prognosis when possible and to give families a chance to anticipate declines or changes.

Listen and try to identify areas of doubt as they surface

What can seem like second nature information to us as health care professionals often is completely new to the layperson.

After I examined her dad and confirmed that his breathing had indeed changed in the last several hours, I encouraged Clara to let her son come over and stay with her for the night. I also reviewed the information on how to call us and what would happen after the death.

"Thank you for explaining things to me. It really helps." Her smile now had a look of relief-still tired, but more at peace. I gave her a hug before heading back out into the snow.

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Joy has been a nurse for 35 years, practicing in a variety of settings. Currently, she is a Faith Community Nurse. She enjoys her grandchildren, cooking for crowds and taking long walks.

14 Likes, 4 Followers, 81 Articles, 144,544 Visitors, and 358 Posts.

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Wow...you are a solid nurse. Hospice is rewarding and incredibly difficult. Sounds like you know your stuff. It's a blessing and a nightmare for you too, not just the patient and family. I know I got to a point where I couldn't handle the death anymore. Much respect, keep up the good work!!

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Thank you for your kind comment, jk. You are so right--hospice work is not for everyone and it is necessary to take a professional break at times. I hope you have found another nursing field that is fulfilling for you.

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Hospice is wonderful and I applaud the nurses who choose this as their field.

That said, to be honest, most of the care does fall on the family member/s. Often it is only one family member, a wife or daughter who has the 24/7 care of their husband or parent.

In other nations, "hospice" care means a facility where a person, at the end of their life, receives compassionate, non invasive, palliative care, with enough pain relief to keep him/her comfortable.

Kudos to the nurses and family members in the US who can do what they do for end of life care for their patients or family members. However, we are, in the US, far behind other nations in our care for those who are terminally ill.

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Hospice is wonderful and I applaud the nurses who choose this as their field.

That said, to be honest, most of the care does fall on the family member/s. Often it is only one family member, a wife or daughter who has the 24/7 care of their husband or parent.

In other nations, "hospice" care means a facility where a person, at the end of their life, receives compassionate, non invasive, palliative care, with enough pain relief to keep him/her comfortable.

Kudos to the nurses and family members in the US who can do what they do for end of life care for their patients or family members. However, we are, in the US, far behind other nations in our care for those who are terminally ill.

Dear Chessie, You are right that most of the care does fall to family members. Sometimes they partner together but often there is one primary caregiver who does most of the end of life hands on care or care management. There are pluses and minuses to our system, including the fact that patients often prefer home care over hospice house care. Some hospices to have hospice houses which are used primarily for symptom management, respite, and in a few cases, private pay longer term hospice care. It is hard to compare systems--apples and apples, so to speak--but I hope that our commitment always continues to be strongly in favor of what is best for our patients.

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Yes, the care falls to the family.. but know this.. ONE member 95% of the time. My BIG ASK, is if all nurses that care for a dementia pt or alzheimers in any clinical regard, make sure that discharge planning includes referrals to a social worker to get the family member caregiver, actual, tangible help. My bf and I were the only caregivers for his 82 yr old mother with Alzheimers for 3 years though stages 6 and 7. I was doing my pre-reqs to become a nurse at the same time! Now that I am a nursing student, writing my own care plans, I am so upset that no one did the basics for supporting us, the caregiver, now that I know what they should have done. At the last hospitalization in stage 7, I begged for hospice, because I felt death was imminent and we promised she could pass at home. Suddenly, the magic word..... my specific request for hospice information got us the support at home during the 6 days of her active dying process. Remember how we are supposed to assess if a pt can pay for medication? Please know that a memory care placement averages $8,000 a month, IF you can get a placement spot. Insurance will not pay for care up front, applications for VA coverage take months to years, and We couldn't afford memory care, the only option was for my bf to close his business to care for his mother. I am part of an Alzheimers/Dementia Caregivers support board now, and I am shocked at the number of caregivers that still do not know they can ask for referrals to hospice. Please offer hospice referrals to families. If nurses don't do it, it doesn't happen and in our case, Mom's neurologist, GP, cardiologist providers all dropped the ball.

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I never understood what hospice did until I started working at a nursing home. It's hard on us when we lose our residents, as we grow so attached to them, but the hospice nurses have been so amazing. They are always so sweet and kind, they're great at handling upset family members and have even helped us employees. Thank you to all hospice nurses and aides.

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Hospice is a nightmare. The family are lay-people who have no idea medically what we're doing - how to lift and turn the patient, how to perform hygiene without hurting them, how to assess signs and symptoms; in other words, how to be a NURSE. We were given a booklet with a few drug names and diagrams and suddenly we are supposed to be practical nurses. The hospice company wants to have the family members do all the work while they collect the money. The only med was morphine tablets; if those didn't work, too bad, my father will just have to go the hospital. That's total BS. Really - absolutely NO other pain meds?? No patches, injections, IV's of other types of meds? We finally got the hospice company to provide agency LVNs with no guarantee whether there would be a nurse from one shift to the next. We were naive and ignorant and didn't know what questions to ask since our father was the first dying person we had to care for. Boy were our eyes opened. Our hospice was a money-grubbing corporation that will let a dying person suffer if it means a few more pennies of profit.

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I don't know what planet you are on but it certainly isn't earth. Having been a hospice nurse I only met one nurse who was sub part and she shouldn't be a Nurse period. Hospice care incorporates all modes of Healthcare and when end of life care requires it all of the agency provides 24 hour care. CNA'S LPNs RNS, Social Workers, Chaplaincy, and Music Therapy. Like most forms of Healthcare for the elderly Medicare controls the fees and I will tell you since your bitterness blocks your common sense nobody is getting rich except maybe the executive's of a couple of major corporations.

Although hospice has services for the caregivers their needs are secondary to the needs of the person whose life is coming to an end. Palliative care including pain management and terminal anxiety control are given to all. Hospice was created to give a human being the opportunity to leave this world at home, with dignity and in my own words to meet their God no matter their beliefs, more comfortably. If you feel you were not given the proper care then you should have got up off your lazy butt, reached into your pocket and found a method that met your standards.

I don't care if you like me, I don't care if you don't like what I say. I have a long list of families who invited me into their homes at the worst time of their lives and made me feel like family. The two greatest rewards of my career were to have a family member (who shared cake with me blessed by the Dali Lama) who thanked me for the care of his father. He gav7e me an autographed copy of a book he had written on The loss of Compassion he wrote that compassion is there and thanked me for reminding him. The other highlight of my career was my 24 year old RN BSN daughter is a Hospice Nurse.

As I said before your feelings towards me are insignificant but you owe an apology to the women and men who dedicate their lives to a tough specialty in an extremely tough career.

I am not a Super Human, or a saint on earth I WAS A HOSPICE NURSE.

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Can't say anything more than excellent. Your dedication shines through

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I was very grateful for the hospice nurses that helped us. They were so caring, wonderful and compassionate, my goal for my nursing career is to provide that same support to patients and their families. My only point was that I wish we had found them earlier. Too many caregivers are not given the information to have this assistance, when it is needed. I sure as heck didn't sit on a lazy butt... I learned EVERYTHING I could for Alzheimers care, and our experience with hospice in the last 2 weeks of Mom's life gave me a total respect for this work, and the nurses who do it.

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I worked in Palm Beach County Florida and we have 2 not for profit Hospices one in the North part of the county called Hospice of Palm Beach County and one south called Hospice by the Sea. Both provided excellent service in our county and neighboring counties. Palm Beach County is the largest county east of the Mississippi. The most important part of Hospice besides the patient and family is education. Our Social Workers were out on events non Hospice related. We had contract beds in quite a few hospitals and in one an entire floor. This made it possible for us to come into contact with the Drs. And explain what was available. On occasion when staffing was low nurses ended up covering shifts in Assisted Living Facilities. The Doctors would come in on rounds and we would give report and their demeanor changed when they realized they were talking to licensed professionals. Don't think I'm putting down CNA'S I'm not they work hard and many were studying to be LPNS or RN'S. When the doctors asked why we were doing "babysitting" work. We used that opportunity to educate. Once they understood that we were available at home, in, acute care, in assisted living and had our own facilities as well as Medicare guidelines they researched it themselves and we four more referrals. The work is hard and requires a lot of reading especially on pharmacology. At a certain point the Drs. learn to trust your judgment and took your advice some if you proved to be reliable enough even let you write orders and sign them later. We had a department that handied after hours calls and if a nurse was needed you went. Some families called us to inform us they were out of morphine(we used sub cutaneous butterflies and taught the families how to administer morphine) we had an arrangement with a 24 hour pharmacy to allow us to call it in for the family to pick up. We wrote the scrip, put it in a pre addressed stamped envelope,, left a message on service and it was signed and mailed.

Being a Hospice nurse doesn't end with your shift.

I am Catholic and was a lay minister. I served communion to the sick in most of the hosptals in the area. Many of the doctors recognized me either fom church, coaching my daughter, or from my first career as a Deputy Sheriff. When they asked me what I was up to I used it as a time to teach.

I probably could have said àlot less

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