- National Hospice and Palliative Care Organization's 2014 Report http://www.nhpco.org/sites/default/files/public/Statistics_Research/2014_Facts_Figures.pdf
- Many Americans Get Hospice Too Late http://medicalxpress.com/news/2014-11-americans-hospice-late.html
- One local hospice--Hospice of the Bluegrass--for which I volunteer http://www.hospicebg.org/
The info below came from a weekly news update I receive from Hospice of the Bluegrass 18Nov14
Research
There
was an article in the Journal of the American Medical Association last
week that examined the effects of enrolling in hospice care on health care
utilization for patients with advanced cancer. The cohort of patients who
received hospice care had significantly lower rates of hospitalizations, ICU
admissions, invasive procedures at the end of life and lower health care costs.
This
research contributes to a growing body of evidence that shows hospice services
and palliative care services reduce health care utilization (e.g. ED visits,
hospital admissions and readmissions, ICU admissions and invasive procedures).
While this is important for all of us to know, we need to be careful how we
talk about these outcomes. When we describe the benefit and value of hospice
and palliative care services, the most important benefits are to the patient
and family and any cost-savings are an epiphenomenon or side-effect.
There
are scores, if not hundreds of research articles that demonstrate the impact of
hospice and palliative care services on clinical outcomes. As you are likely
aware it has been well established that hospice and palliative care teams
reduce suffering from pain and symptoms, improve patient quality of life, increase
caregiver well-being and ensure medical treatments are concordant with a
patient’s preferences and values. I think the important take home point from
this article is that patients who enrolled in hospice care were less likely to
be hospitalized, admitted to the ICU and receive unwanted aggressive care as
for many patients, part of their goals of care are to avoid any interaction
with the hospital.
The
article, a corresponding video and a commentary on quality, transparency and
accountability from JAMA are all included below. I have also included
comments from NHPCO on the research article and highlighted a quote from Don
Schumacher. Finally, there are two research articles from the Journal of
American Nursing included below and a blog post describing a new hospice
and palliative medicine journal club on Twitter.
·
Association
Between the Medicare Hospice Benefit and Health Care Utilization and Costs for
Patients With Poor-Prognosis Cancer (Journal of the American Medical
Association)
·
Video:
Association Between the Medicare Hospice Benefit and Health Care Utilization
and Costs for Patients With Poor-Prognosis Cancer (Journal of the American
Medical Association)
·
Quality and
Costs of End-of-Life Care: The Need for Transparency and Accountability
(Journal of the American Medical Association)
·
NHPCO
comments on new research (ehospice) - “We
know that many people access hospice care too late to fully take advantage of
all this team-based, patient and family-focused model of care can offer,” says
J. Donald Schumacher, PsyD, President and CEO of NHPCO. “While patients with
cancer still make up more than a third of all those cared for by hospice
providers, their lengths of stay in hospice are among the shortest. This
points to the desperate need for clinicians treating cancer to have
conversations about palliative care and hospice.”
·
Palliative
Care Patients Fare Better with Earlier Referrals (American Journal of
Nursing)- early referrals for outpatient palliative care reduced ED visits and
hospitalizations. Call for increased education in communicating with the
seriously ill among nurses.
·
Original
Research: Staff Nurses’ Perceptions Regarding Palliative Care for Hospitalized
Older Adults (American Journal of Nursing)- nurses play a pirvotal role as
informed advocates for palliative care but there is need for more education as
palliative care and hospice care were often confused.
·
Hospice and Palliative
Medicine Journal Club on Twitter-#hpmJC (PalliMed)- there’s now a hospice
and palliative medicine journal club active on Twitter.
We had in home hospice care for my grandpa when he died of cancer over 10 years ago. He had actually lived with us my whole life so for him to die at home was an awesome experience for us. I distinctly remember the entire day when he passed. My mom was always the one helping out the most with the hospice nurses and he died peacefully with my mom in the room. Hospice was a really good experience for me and all my cousins aunts and uncles. We were able to come to terms with the reality of him not getting better and that his death was going to happen. This was important with some of us children being so young. I still have the pillows we made with through hospice with his handprint and mine sewn into it. If hospice is not something you've experienced before I would recommend it (as terrible as that sounds) if you are dealing with an end of life situation down the road.
ReplyDeleteMeghan, I am really sorry to hear about your grandpa. It seems that you were very close, and I am very happy to hear you had a positive experience with hospice. I can already see the difference between hospice at St. Elizabeth and your experience with home hospice care. I believe that St. Elizabeth does a fantastic job; however, I believe that social support is essential during the last stages of life. It is not that the staff neglects the patients, its that some of the patients don't have family that visit. They are left to face death alone with the help from the hospital staff they have never met. I am happy to hear that your grandpa was surrounded by the ones that he loved during such a painful time. I think we should never take home hospice care for granted
DeleteMeghan, I am sorry about your grandpa, but glad to hear that hospice was a good experience for you and your family. I didn't really know much about hospice as no one close to my family has had this type of care. I think it is great that hospice care can be in-home, because I just assumed it was mainly in hospitals and nursing homes. I feel like dying in comfort at home where you have so many positive memories would be much preferable to dying in a hospital room.
DeleteAnother thing that I didn't realize about hospice was how long term it was meant to be. I thought that it was usually care for the last few weeks or so of a patient's life, but after reading through several of the articles, it definitely makes much more sense that it is intended to be longer term (even though most people are only in hospice for about 2 weeks), for up to 6 months before a loved one is expected to pass away. This seems like much better care for the ill person and sounds like it makes it much easier on the family if there is plenty of time leading up to it where they are receiving emotional and spiritual support as they go through this tough time.
Meghan,
DeleteI am sorry to hear about your grandpa, but I think it s wonderful that you had such a positive experience with hospice. I found the fact that you made a pillow with your grandpa was very special and very considerate for the hospice staff to do. I think hospice is a great resource that is under-utilized. In particular, I think the home hospice is a great program. My grandfather had home hospice as well and they provided him with many comfort measures in the weeks leading up to his death.
I am from cincinnati and my family has used hospice of cincinnati twice. First with my grandma who was dying a abdominal cancer which led to blood circulation to be cut off from her legs. She was in the most excruciating pain. The support hospice gave her and the nursing home she eventually died in my family will forever be grateful. They gave her the pain relief she needed to pass as peacefully as she could. My second experience with hospice was with my aunt. My aunt was 50 years old when she was diagnosed with a rare adrenal gland cancer that effected 1 in 1,000,000 people. This diagnosis was practically a death sentence no one had ever survived this cancer. She fought for a year using experimental type of chemo and radiation treatments. The suppression of her immune system ended up killing her with a diagnosis of pneumonia. Hospice came into her home and was helpful to her two kids and husband through this tough time. Without hospice in both these experience in my family i think the feelings towards their deaths would have been different. Hospice came in with experience in these situation and handle them with a grace that i am forever grateful for.
ReplyDeleteEmily,
ReplyDeleteI am so sorry to hear about the loss of your grandma and aunt, it must have been hard on you. I think that it is really good though how hospice came to help your grandma by giving her the pain relief she needed to make her death more peaceful. Also, I think it is great that hospice came to your aunts house to help her with her adrenal gland cancer and while there also communicated with her husband and kids. I have heard of abdominal cancer before but, I have never heard of adrenal gland cancer. I think its interesting that, this specific cancer effects 1 in 1,000,000 people and that no one has ever survived it. Emily, once again I am so sorry to hear about the death of your grandma and aunt but, am very glad that hospice helped you and your family throughout these two tragic death experiences.
Emily, I am sorry to hear the loss of your family members. I am glad that you had a positive out look on hospice and that hospice was able to help your family for the better. I think it is wonderful what they hospice staff can do to help families transition with the death of a loved one.
DeleteI have never had any personal experience with Hospice care, but hearing everyone's individual experiences are very touching. It is good to know that even patients who have no one left, can still receive visitors through volunteer work at the hospice center. Though I have never had family in Hospice, I did work at a nursing home where there was a section for patients which was similar to hospice.
ReplyDeleteIt is interesting to me that even with your not having much experience with hospice, you still see the value of the patient not being alone when they die. I think this is such a great value that hospice provides the dying. Having been with several family members as they passed in hospice, I can tell you how important this is for the patient. Just to have another human life be interested in your passing makes the process easier I think. I don't know why, but someone dying alone seems like it would make it harder to go on and "cross over" so to speak. Don't you agree?
DeleteI read the article from Medical Press and I was very surprised to read in the first sentence that, "Of the more than 1.5 million patients who received hospice care in the United States in 2013, one-third died within one week of getting it". Just thinking about this fact gives me chills because how is it that possible for someone to go into hospice then die. To me it would be more relaxing for the person, but also seems like the people should be moved in there sooner to be more comfortable. Another fact that I could not believe was that 63% of the people who received hospice care were not cancer patients but had other illnesses. I'm not saying that others do not deserve it because they do, but I think that cancer patients should be in hospice sooner.
ReplyDeleteI read the article about Americans getting hospice care too late. It is very sad that this staggering number of patients receive hospice care too late. I was surprised with the statistic that 66% of hospice care was provided where patients lived. I thought this statistic would be lower because from my understanding it is very expensive to receive this type of care from home but maybe someone could provide the totals for care at home versus going to a hospice facility. At the end of my life I hope I can receive care in my house because I much rather die peacefully in my home than at a hospice facility but often times that is a decision not many people get to make.
ReplyDeleteI have volunteered for Hospice for the last three years. Even though I have extreme respect for the job they do I have some problems with the article above. The issue I have is that they state a decrease in ICU visits and decreased invasive procedures as justification for Hospice; however, in reality that is not unexpected it is true by definition. Hospice is not a place where healing occurs physically. Its role is to provide end of life care centered around a holistic approach which includes comfort, relief, and management which allows the family to proceed through grief without the job of managing death themselves.
ReplyDeleteExperience with hospice care was positive. My grandmother died over the summer and we took her to Hospice of St. Elizabeth Edgewood, right behind the hospital. They took great care of my grandma. They kept her comfortable with equate pain medicine and they let her pass on her terms. The atmosphere in which she passed was calming. The room was big enough for my family to visit and say their good byes. The staff was nothing but helpful and supportive to my family. My grandma's death sort of unexpected. She was had been in and out of the hospital all summer but we didn't think that she was going to die. Hospice made the transition easy and peaceful for my family and for my grandma. I am very appreciative for what the hospice staff do, I know that I couldn't do that job.
ReplyDeleteI have firsthand experience with the benefits of good end-of-life care. Both of my maternal great-grandparents died within my lifetime while I was at an age to still remember them. Grandpa died of throat cancer and grandma died of dementia. Grandpa's was much more graphic and painful thank grandma's passing was, but the process for both took huge tolls on our family. My relatives spent countless hours at the homes they' were both kept at in their final days. Each night we left not knowing when would be the last time. However, this burden was eased by the help of caring staff at the hospice center in ft Thomas, ky. For us, it was not so much the cost that we thought about as it was the emotional weight that someone would have had to take them into their homes to die. How does one continue life in a home where you brought your loved one to die? For this reason, hospice was the obvious choice. So I definitely understand how it is epiphenomenal and based on the family's need when evaluating benefit and burden.
ReplyDelete