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Hard Days for Hospice

AIR DATE: Tuesday, August 19th 2008
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How will budget cuts affect hospice care?

Preparing for death is one of the hardest things we have to do. When the end of life is not sudden, but gradual, families are often faced with choices about how to make their loved one most comfortable in their last days. The numbers of people dying in hospitals has been falling steadily in Oregon over the past decade as many more people choose to finish their lives at home or in a hospice care facility.

More than half of the Oregonians on Medicare use the benefit to cover end-of-life hospice care -- making up approximately 80 percent of the budget for hospice organizations. With more and more people across the country using Medicare to cover hospice each year, the costs to the federal program have also been on the rise. The Centers for Medicare and Medicaid announced earlier this month that they would be making cuts in reimbursments for hospice care over the next three years.

Has your family used hospice care? Are you using it now? Why did you make that choice? What can you tell us about your experience? Do you work for a hospice organization? How will the cuts affect you?

GUESTS:

Photo credit: gregor_y / Flickr / Creative Commons

Tagged as: dying · hospice · medicare

I consider caring for those who are nearing the end of their mortal life to be another part of being pro-life. I have to question whether the talking heads that claim I should vote for them on a pro-life, pro-family agenda really mean what they say when they are again trying to destroy quality of remaining life for another helpless segment of our society. How many of those trying to reduce medicare hospice coverage have been to one of those depressing near-death nursing homes recently? Are they willing to commit to going to one themselves when their time comes or will they want to stay in their homes or a caring hospice environment? Who in their right mind would rather face cancer or some other approaching fatality as another discard in an overworked depressing smelly facility that isn?t homelike?

Is it any wonder that some folks feel pressure to opt out and do the ?death with dignity? bit? Of course, this might also be a way to encourage people to get on with it, like the state of Oregon did to Barbara Wagner recently ( http://www.katu.com/news/26119539.html ). Guess that means it?s not just the conservatives who can be talking heads.
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helpgodme —
I cared for my mother during the last 2 years of her life. The last seven months of that time we received hospice care. I probably couldn't have kept her at home, without the support of the hospice nurses, social workers and aides. Hospice is a vital service, providing much needed care, and actually saving the government money if you look at the big picture. It is hard to understand how governmental decision-makers can consider cutting funds for this service!
shomerah —
When I heard what your topic was today I started crying. I am a Portlander with a very sick mom dying of Pancreatic Cancer in Walla Walla, WA. She is so ill that we cannot care for her at home. She has been in the hospital for 2 weeks and now will have to go to a Nursing Home for her end days. My sisters and I will have to waive her Medicare benefits to pay for Hospice and will be paying for her nursing home stay out of pocket. It will not be easy as it is very expensive. Even though the doctors say, "She does not have long", it could be several more weeks. It seems very unfair!!
nancysin —
I am an adult child who returned home to live with and care for my mother for two years. She live for 2 years after cancer diagnosis and surgery. In March of 2006, after learning her cancer had spread, she opted for no additional treatment and she received Hospice through April and early May before dying. Medicare paid for it.

Hospice was a godsend - both for her as she was dying and for me as the only person in the house with her. Her nurse and bather became friends and comforters to a very, very strong woman used to being in charge.

And most importantly, Hospice helped grant her two wishes - to die at home and to keep pain under control. My brothers, sisters and I are so grateful.

As the only caregiver, with demanding but non-present siblings, nurse Shirley became my lifeline also, so I could attend my mother as best possible.

That said, our family could have afforded to pay for this care - and I support means testing the ability to have Medicare-paid hospice. My parents would agree with this - they believed they were privileged to live in that generation which reaped the rewards of social security, medicare, etc and that because they could pay, they should so others who couldn't pay would hae the benefit, and more importantly, they would not rob the resources available to their children and grandchildren. THey worried that we would not have the benefits they had, given the state of things.

Cynthia Griffin


cincha —
As a hospice manager for 7 years and a Registered Nurse I can tell you that hospice care is not used enough. Many physicians, patients, and family members believe that they have to have wait until the patient has just a few days to weeks left to live. In order for hospice to do the work we are intended to do patients need to be admitted to hospice months before so that we can provide all the necessary services that are offered to them by Medicare.
Your program has shown a couple of problems with providing hospice care to those who need us when they need us. One problem is with Medicare and their guideline that pts must have a prognosis of 6 months or less to live. The second problem is that Medicare has guidelines that must be followed and in many cases are too severe to allow a hospice provider to start care in a timely manner.
Listening to the family and patient, hopefully your listeners will gain a better understanding of what services that are provided.
Quality of life is what hospice provides. It is not quantity that counts, but it is quality and as a hospice provider that is our main focus. We care for not only the patient but also the family and if a patient is in a facility rather then their homes, hospice will partner with the facility to enhance the quality of care provided to the patient.
Thank you for providing this information to everyone in Oregon.
Jo Anne Foulk, RN, CHPN
Patient Care Manager
Odyssey Health Care
Portland
Jo Anne Foulk —
Hello!

Three years ago my mother passed away from colon cancer. She wanted to die at home and not in the hospital. My sister and I cared for her for seven weeks at home and had hospice support. I have to say that caring for her at home was a tremendous responsibility and neither of us have formal medical training. We absolutely could not have managed it with out that hospice support. I think to die at home is the best way to end life, but you really really need the help. The people in the hospice program were utterly amazing. But we most certainly could not have afforded this help without Medicare and that would have been horrible, truly truly horrible.

I am absolutely horrified that cuts are being considered. We were already overburdened with medical bills and when mom got the hospice care, everything was covered and it was an amazing relief. This is not a place to cut cost. I feel that our society choosing to make it possible for people to die at home and choosing to cover the cost of the care is really a "moral" choice, meaning this is something we feel as a society we want to do for others so we pay for it. I feel that to claim that we need to "save money" and thereby justify not paying for it is wrong. This is about putting your money where your mouth is, and if we wish to be a humane, good, and many say "Christian" society, we should at the very least do our utmost to care for those who are dying and make it possible for them to die at home, and that means paying for it.

There are many other wasteful things we allow our government to spend our money on that could be cut, this is not one of them.

Sincerely,

Heather Peterson
hpeterson —
I am an RN at the very rural hospital in Burns. After the 2nd hospital admission within 2 weeks for my 73 year-old mother's end stage chronic lung disease, we opted to put her in the hospice program. Not only did she do much better breathing-wise, but she was able to stay in her home where she wanted to be. I felt safer knowing that someone else was helping her and I wasn't her sole support. She lived for 2 months after her hospice admission and died comfortably on July 30th. Hospice saved the cost of AT LEAST two more hospital admissions, kept her comfortable and even brought her out of her shell to enable her to not be isolated at the end of her life. Financial costs are important to control, but hospice saves more than hospital costs, it saves on human costs as well.
Nancy Carpentier
Burns, OR
carpentier —
Our family has had 2 experiences with Hospice. Two issues to comment on:
1) It's very important for potential users of hospice care to realize that hospice, in itself, will not guarentee that you will be able to remain in your own home. Hospice does not provide the 24/7 care needed many times for that to happen.
2) A diagnosis is needed to order hospice. My mother was being treated by her physician in WA, but no effort was made to diagnose what actually was causing her symptoms. After she had several falls in 2007 with declining health, I brought her to Portland. The 1st physician she saw got her the testing necessary to diagnose her kidney tumor. Within 5 weeks she was on hospice, and died 1 week later. She would had died a very uncomfortable death without hospice care.
Chickadee —
When my father was dying, Hospice helped me understand the process of death. This helped me so much in coping with the unknown elements of his last days and hours. Our hospice nurse was tremendous.

My mother's hospice nurse was aware of the progression of symptoms of her imminent death and brought the family together so that we could be with mom in her last moments.

Hospice offered us support, information and ongoing contact after my parents' deaths. They were available to the whole family in so many ways...

Now, my parents' physician seemed to call hospice in toward the end. In both cases we availed services for less than a week. It would have been nice for me to have had hospice brought in sooner for all they bring to the process practically and spiritually.
arbonneLO —
My father had alzheimers for years. The last 9 months of his life were spent in a nursing home. We couldnt tell when he passed the 6 month minimum life expectancy, so he had only days left by the time we understood it was the end. I do wish we'd have called Hospice in sooner. But the time we did have with them, with the help of their expertise and love, became a passage of immense comfort, closure, and peace for my dad, as well as the family. Because of them I saw the symptoms of his approaching death with understanding instead of horror. They showed us the way through the mystery of death, and helped me participate in a useful, loving way in my dad's passing. No amount of money could pay for this depth of ministry. I am so thankful for them!
apple126 —
I've been a hospice nurse for 3 1/2 years. I've seen patient load and acuity increases, but not a comparable increase in the staff that sees those patients. The agency I work for has to triage and ration services that were once provided for all (i.e. bath aids, physical therapy, music therapy, ect). We've also had to change the type and amount of supplies that we use for care. Most of these changes were done to help combat increasing expenditures due to the rising cost of services and supplies. I get ill when I think how difficult it will be to continue to provide quality care when we are given less and less resources.
nurse-laura —
I concur with your comments. My father died with hospice care in 2006. He was in hospice 6 weeks, and received reasonably good care. Continuity of care was challenged by the lack of nursing staff. I think we say at least 3 different nurses, sometimes they were unable to come when promised, and we never knew which nurse would show up. He did receive bathing assistance, but the only other hospice person involved was a social worker who appeared obviously stressed and overbooked. This was in Washington state and I fear Oregon is no different. My mother was in hospice care here in Portland for only 5 days and saw at least 3 different nurses.
Chickadee —
I have been a hospice nurse for 15 years working in Hospice in both eastern Oregon and Portland metro area. I often speak to groups about hospice and try to stay current in the cost of hospice care and the political arena. I am curious to the comment that was made by "Glen" (I think) in referance to a recent study? article? His statement implied the conclusion was that with increase LOS? or increase use of Hospice, that Hospice care exceeded the cost of "Traditional end of life care." Please clarify this ariticle or site the source of this data.
kdronkow —
I'm sorry I didn't realize earlier in the day that this was the TOL topic for the day! As a hospice social worker for the past three years, I have learned that while most people wish to die at home if possible, most adults have no idea what the costs of long term care or in-home care really are.

While the medicare hospice benefit is a wonderful benefit, it does not cover 24 hour care and is designed to provide "support" to families who are caring for their loved one at home or in a long-term care setting. Many families are upset when they find out that we can't provide a 24 hour caregiver or pay for nursing home care as part of their hospice benefit. Many people assume that medicare simply pays for nursing care when they need it, when in fact medicare only pays for nursing home services for rehabilitation and will not pay for rehab and hospice at the same time.

Now, add to the already difficult situation that families need to either a) have the time and capability to provide hands-on care to their family member at home or b) have the funds to pay for in-home care (avg $20/hr in the pdx area) or for care in a long-term care facility ($1500-$7000/mo depending on the type of facility and care need) that medicare will be cutting the reimbursement to hospice providers. This means that providers will be less able to fill the "gaps" in care and help families do their best to meet patient needs at home. The difference may look like one nursing visit per week instead of two or having only one visit from the bathing aide each week rather than two or three. As a social worker, it may mean that I have a higher caseload and therefore families have to wait longer to get my help with making funeral plans or assigning a medical power of attorney.
Brandy Halprin —

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