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Hospice - Misunderstood and Underutilized

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VickyRN VickyRN (New Member) New Member

VickyRN is a Nurse Educator with over 23 years in experience.

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Hospice is unique. Rather than a site of care, hospice is a philosophy of caring for dying individuals.

Hospice - Misunderstood and Underutilized

Janet, age 65, has been bravely battling metastatic renal cell carcinoma for two long years. By the time the cancer was first discovered, it had stealthfully spread to the bones and brain. Despite having undergone numerous invasive tests, surgeries, and radiation and chemotherapy treatments since diagnosis, Janet has deteriorated into the final terminal stages of the disease. She is weak, pale, fatigued, anorexic, often dehydrated, and constantly disoriented. She has little quality of life left and has become frail and dependent. When not in the hospital, her devoted husband Kenny, age 70, takes care of her day and night at home. Kenny is in denial - He refuses to entertain any thought of Janet passing away. Both the medical and radiation oncologists have fed the family false hope and continue to suggest futile treatment after futile treatment. When approached about hospice and its many benefits, Kenny states he does not want hospice as this would mean "giving up" any hope for Janet's cure from this dreadful malignancy. This tragic case illustrates some barriers that exist to using hospice services. Clearly, hospice needs to improve its public image and dispel widespread ignorance so that its services can be better utilized.

An interdisciplinary team (which is composed of a registered nurse, a physician, a social worker, a home health aide, a chaplain, and trained volunteers) helps patients and families meet physical, emotional, social, and spiritual needs. The team develops a care plan tailored to the patient's individual needs and provides all the necessary medical supplies, equipment, and palliative medications and therapies. The nature of the patient's needs determines the level of service that is provided. Bereavement services for survivors are also an important component of hospice care.

Hospice promotes the idea of "living to the fullest until you die." The focus is on the quality of remaining life rather than life extension. Hospice neither speeds up nor slows down the dying process, as this type of care accepts the fact that dying is a normal part of life. Unfortunately, this view of life and death is still quite foreign to our death-denying culture.

In 1967, Dame Cicely Saunders, a registered nurse who later became a physician, founded the modern model of hospice for the incurably ill in England, when she opened St. Christopher's Hospice. Within a few short years the hospice movement began to rapidly expand to the United States and elsewhere. Since 1974, over 7 million patients and families have received end-of-life care at home or other settings through hospice programs in the US.

Hospice is an option for people like Janet with a terminal diagnosis whose life expectancy is six months or less. One of the real advantages of hospice is that personnel are trained to treat pain and other unpleasant symptoms aggressively. The patient should be as comfortable as possible while at the same time remaining as alert as possible. Sadly, most people wait until the last few weeks of life to take advantage of hospice services, and many do not use its services at all. What a tragic underutilization of a marvelous program!

What has been your experience in promoting hospice services to people such as Janet and Kenny? Does choosing hospice care really mean giving up hope or even hastening death? What ideas do you have for dispelling these false ideas and promoting its services?

References

hospice care: the modern hospice movement

medicare hospice benefits

VickyRN, PhD, RN, is a certified nurse educator (NLN) and certified gerontology nurse (ANCC). Her research interests include: the special health and social needs of the vulnerable older adult population; registered nurse staffing and resident outcomes in intermediate care nursing facilities; and, innovations in avoiding institutionalization of frail elderly clients by providing long-term care services and supports in the community. She is a Professor in a large baccalaureate nursing program in North Carolina.

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Thanks Vicky - timely thread.

I've been a hospice nurse for 3 years now and most of our local physicians understand hospice but a few do not. Many, but not all of the cancer docs in the bigger city down the mountain seem reluctant to refer to hospice also.

We just opened a man on Friday whose physician was encouraging aggressive treatment to the point that the family decided to choose a new physician and we got the referral on Thursday. This man's wife was very discouraged by the former doctor's advice.

I got a call yesterday morning that he was unresponsive - his wife was distraught. I arrived to find him alive but having seizures. We ended up spending a few hours there and with the help of the HHA we were able to get him bathed and comfortable. He even had a bm, which is what usually causes his earlier state.

His wife wept with relief at having help. She's been doing this alone with occasional help from her son, grandson and neighbor.

She kept apologizing . . "This is his first day on hospice and I feel bad for calling you so soon". I reassured her that hospice was there for her 24/7.

If only . . . .we'd been called in earlier.

There does seem to be a tendency to wait until the patient has only a few days left and then hospice is called.

Yes, we do need to do more education.

Again, thanks for this.

steph

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There was an excellent article in our local news paper that quoted a local Rabbi as saying the Orthodox community opposes hospice because it means "giving up". I was horrified when I read that. I hope the hospice community arranges a meeting with the Orthodox community and try to educate them. My mom just went into hospice. She has only two medical conditions, very advanced dementia and cardiomyopathy. She was admitted to hospice because she stopped eating, that is usually a sign that dementia patients are getting close to the end. The hospice people do not seem to be focused on her dying though the subject was mentioned. Their main focus seems to be getting her to eat which would seem to be about living to me.

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I was a hospice patient once, and I can tell you that it is great. I am thankful that I improved and am now on my own with healthcare provided, so I can still enjoy my family and friends, but I already told my doctor I want to die at home. Hospice is the best way to go.

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This is a wonderful post. Next week on June 24th will be three years since I watched my step-dad leave this Earth while under absolutely amazing Hospice care. We had an incredible nurse who I will forever remember. He was in a lot of pain from the cancer spreading throughout his body. On the day Hospice came to the house, he was finally able to lay down and relax. His kids came to visit from out of state, he made phone calls to family on the East Coast to say farewell. It was so emotional yet relaxing to know he was not going to spend the rest of his time in agony. He passed away about two weeks later with me right by his side. Tears still form when I recall his passing, but I am so happy we had Hospice. Right after his death, I became a Hospice volunteer and it helped me heal. I continue to volunteer and have the greatest love and appreciation for Hospice and Hospice nurses. Thank you!

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I completely agree that Hospice is misunderstood and underutilized. I am a home health nurse and we do not offer hospice but we do have a Hospice company that we make referrals to. We come across family members that want their Mother, father etc. that are terminally ill to have home health rather than hospice because they think that getting hospice is just saying that you have given up. I cannot try to give up a referral but I can try to clarify confusion and let them know the difference so they make an informed decision. I have heard that they do take away some of the financial burden and offer so much more than home health care. Now do not misunderstand I am all for home health but it is more for short term and rehabilitation. I almost think that the word hospice just needs to be trashed/deleted and given a new name and maybe people would be more open to actually listening to what they have to offer because it really is an amazing service not just for the patient but the family as well.

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You are so right when you mentioned that hospice is for the family as well as for the patient. It's an amazing service.

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Im delighted with this article.:heartbeat I have just joined this site and very pleased at the first article that I read was about Hospice. I myself have had the opportunity to experience Hospice with my brother, in 2009.

There was much ambivalence with my brother accepting Hospice Care, only because he didn't understand it, as did other family members. I'm so grateful for the services they provided my brother as well as for us his family members.

We had the opportunity to have Hospice in home with my brother in his last stages of his life,mand every chance I get I spread what a great joy it is to have such a marvelous service. All people need is to have education on this and they too will be pleased.

Yes, it is hard to watch a loved one come to an end in their lives, but Hospice was remarkable in providing support in every area for my family.

I will forever be grateful for Hospice, serving my brother and our family in such difficult times.

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Im delighted with this article.:heartbeat I have just joined this site and very pleased at the first article that I read was about Hospice. I myself have had the opportunity to experience Hospice with my brother, in 2009.

There was much ambivalence with my brother accepting Hospice Care, only because he didn't understand it, as did other family members. I'm so grateful for the services they provided my brother as well as for us his family members.

We had the opportunity to have Hospice in home with my brother in his last stages of his life,mand every chance I get I spread what a great joy it is to have such a marvelous service. All people need is to have education on this and they too will be pleased.

Yes, it is hard to watch a loved one come to an end in their lives, but Hospice was remarkable in providing support in every area for my family.

I will forever be grateful for Hospice, serving my brother and our family in such difficult times.

So sorry for the loss of your precious brother, Joyful Giver. Hospice is a marvelous program and so grateful your family took advantage of its services during such a difficult time. Glad this article was a blessing to you. By the way, :welcome: to allnurses!

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Hospices are truelly tremendous places Palliative Care is a passion of mine & as a nurse working in a General Surgical Ward mainly colo rectal we have many patients that require palliative care input I have to say over the years i have seen a massive improvement in the care provided for these patients We have a referral system with the palliative care team where the Palliative care Consultant & Nurse become involved very quickly be it for sympton control, advice for nursing staff & doctors,end of care life & involvement with the patient & family Unfortunatley there are just not enough hospice beds available & as nurses on the ward we try to provide the best care possible . I recently visited a hospice prior to an interview & as soon as i walked in i thought " this is it This is where i belong " The in patient unit was a beautiful stylish but homely enviroment where although yes it has to be clinical in certain areas the family rooms ,garden area & other private rooms provided exactly the enviroment that patients,relatives & loved ones deserved at such an intimate time The out patients services were truelly spectacular & the range of different facilities available to patients was impressive. Where i live our Hospice is well in the public eye It releases newsletters , emails & is a cause on facebook therefore if u have it as a link any of their charity events are well advertised & therefore attended Palliative Care & Hospices require special individuals to work there & their dedication should be commended I can only hope that more hospice beds become available so that more patients can benefit from the services they provide.

Lozz :redbeathe

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I also agree that hospice is entered to late. I am in home health and family is constantly refusing even to speak with a hospice representative

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Our agency is currently starting a hospice agency in addition to our home health services

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