Monday, March 29, 2010

NHPCO's Response to Health Care Bill

The director of our agency forwarded the NHPCO response to the passing of HR 3590, the Patient Protection and Affordable Care Act. NHPCO has been lobbying on the behalf of hospice and palliative care organizations and will continue to do so- in fact, this is the only kind of lobbying I can support:) On a serious note, if our country would start dialoging about end of life issues, I wouldn't be surprised if Medicare expenses would go down. And then maybe they wouldn't suggest cutting the hospice benefit but increasing it! Wishful thinking perhaps but this girl can dream. In any case, here are the highlights of the email.

"H.R. 3590 is actually the version of health reform that originated and passed out of the Senate last December. This version of the bill, the one that has now passed both chambers of Congress, softens the productivity cuts to hospice from a proposed $10 billion to $7.8 billion. Here’s an overview of what is in the final package relevant to end-of life care:
  • Market Basket Cuts & Productivity - Incorporates a productivity adjustment reduction into the market basket update beginning in fiscal year 2013, as well as a market basket reduction of .3 percent for hospice providers from fiscal years 2013-2019. Note that these cuts will not take effect until FY 2013.
  • Hospice Payment Reforms (1) This provision would require the Secretary to collect data and update Medicare hospice claims forms and cost reports by 2011. (2) Based on this information, the Secretary would be required “implement revisions to the methodology for determining the payment rates for routine home care and other services included in hospice care” no earlier than FY 2013. (3) After January 1, 2011, a hospice physician or nurse practitioner must have a face-to-face encounter with each hospice patient to determine continued eligibility for hospice care prior to the 180th-day recertification and each subsequent recertification, and attest that such visit took place. In addition, the Secretary will medically review certain patients in hospices with high percentages of long-stay patients.
  • Medicare Hospice Concurrent Care Demonstration Program - Directs the HHS Secretary to establish a three-year demonstration program that would allow patients who are eligible for hospice care to also receive all other Medicare covered services while receiving hospice care. The demonstration would be conducted in up to 15 hospice programs in both rural and urban areas and would undergo an independent evaluation of its impact on patient care, quality of life and spending in the Medicare program.
  • Curative and Palliative Care for Children in Medicaid and CHIP - Allows children who are enrolled in either Medicaid or CHIP to receive hospice services without foregoing curative treatment related to a terminal illness.
  • Independent Payment Advisory Board - Creates an independent Payment Advisory Board tasked with presenting Congress with comprehensive proposals to reduce excess cost growth and improve quality of care for Medicare beneficiaries as well as the private health system. When Medicare costs are projected to be unsustainable, the Board’s proposals will take effect unless Congress passes an alternative measure that achieves the same level of savings. Congress would be allowed to consider an alternative provision on a fast-track basis. Requires the Board to make non-binding Medicare recommendations to Congress in years in which Medicare growth is below the targeted growth rate. Beginning in 2020, requires the Board to make binding biennial recommendations to Congress if the growth in overall health spending exceeds growth in Medicare spending.
  • Hospice Value Based Purchasing/Promoting High Value Health Care - Provides the Secretary of HHS the authority to test value-based purchasing programs for long-term care providers, including hospice providers, no later than January 1, 2016.
  • Quality Reporting - Requires hospice to report on quality measures determined by the Secretary (endorsed by the new quality measure consensus-based entity) or face a 2 percent reduction in their market basket update. Measures published in 2012 for reporting to begin in 2014.
  • Nationwide Program for National and State Background Checks on Direct Patient Access Employees of Long-term care Facilities and Providers - Establishes a national program for long- term care facilities and providers to conduct screening and criminal and other background checks on prospective direct access patient employees.
  • Advancing Research and Treatment for Pain Care Management - Authorizes an Institute of Medicine Conference on Pain Care to evaluate the adequacy of pain assessment, treatment, and management; identify and address barriers to appropriate pain care; increase awareness; and report to Congress on findings and recommendations. Also authorizes the Pain Consortium at the National Institutes of Health to enhance and coordinate clinical research on pain causes and treatments. Establishes a grant program to improve health professionals’ ability to assess and appropriately treat pain.
  • Education and training programs in pain care - Secretary may make grants available to hospices and others to develop and implement pain care education and training programs for health care professionals.

While we appreciate the fact Congress continues to embrace hospice as a vital part of health care at the end of life and we’re pleased to see the provisions included expanding access to hospice, we simply can’t afford to lose $7.8 billion from the national investment in end-of-life care. We have said it all along; two cuts are too much for hospice. And, we mean it. The productivity cuts on top of the more than 4 percent regulatory reduction associated with the elimination of the budget neutrality adjustment factor (BNAF) we are absorbing over the next seven years, is more than the community can or should sustain. The hospice community was a resource to Congress during this trying past year."

NHPCO will continue to advocate on our behalf. The next step is Capitol Hill Day: April 21st. You can visit the Hill Day 2010 Information Page for more information and to register. They're also gathering

facts to show Congress what the cuts will mean to the hospice programs that serve their communities and constituents. The rest? We'll just have to wait and see.

Friday, March 26, 2010

Return of the Dog Whisperer

Sometimes I bring out the best in people and sometimes I bring out the best in dogs. A man with Alzheimers came on to our service over the summer but the family refused social worker or chaplain involvement. The hospice RN let us know last week that the family was now open to these services- hurray! I met with the daughter and the caregiver the other day. The patient is nonverbal and content to stare outside. I did get some kind of response from him when I mentioned the White Sox' 2005 World Series Championship- he and the family are huge Sox fans so we, of course, got along swimmingly. Also in the mix were the family's 2 dogs: JD and Comiskey. JD was very friendly and eager to be petted. Comiskey is the timid one but surprised the family by coming into the patient's room after we'd been visiting awhile. I held out my hand to encourage him but the daughter was worried Comiskey would freak out and bite off my hand (apparently timidity can also translate to ferocity) so she sent him out of the room. A little while later he came back in, headed straight for me and rubbed his head under my hand, indicating he'd like to be petted! The daughter was shocked! Comiskey was friendly as could be. She said that he's never done that before- he never comes into the room and never lets strangers pet him. Interesting, no? I seriously don't think I do anything special but Comiskey must have sensed I was a kind soul- or at the very least, a Sox fan. Speaking of which, when baseball season starts, I'm going to try to visit during a day game and see if the patient responds to baseball.

Thursday, March 25, 2010


In the last few months, we've had a rash of patients who have fallen and broken their hips. Is something in their water? None of the falls could be prevented (outside perhaps a drastic personality change in the case of some stubborn souls.) Only one family opted for hip surgery; recovery does not look so great. In one case, the family would have opted for surgery but the patient would not have made it through because of their cardiac issues. The other families chose to keep the patient comfortable with medication. In general the patient died a few days later. I know this is not a decision any family would want to make. On the flipside, why would you put your loved one through surgery and rehab when they already have a life-limiting prognosis? I didn't mean to get on my "quality of life" soapbox but there you have it!

Tuesday, March 23, 2010

Role Reversal

I've shared stories in the past about patients or families who have deemed me "too young" and requested a different social worker. I am proud to say I have reached the other side! Well, at least for one family. I met with a new patient and his wife, both in their 40s, the classic sandwich generation. They have young kids and parents with health problems. The wife was very apologetic as she asked if they could have a different nurse. They felt she was "too old" and didn't understand the issues they are dealing with. For instance, they know you need to keep ahead of the pain with medication but the patient doesn't want to be conked out all day and miss out on time with his kids. They felt like the nurse dismissed their concern. Granted this RN is in her late 60s or early 70s and usually provides great care but in this instance, she did not appear to hear what the family had told her during the first visit. As I listened to their side of the story, I was secretly a little giddy that I'm an "appropriate" age for this family! Long story short, they now have a RN that is closer to their age, who also has kids at home. And they really liked me and felt like I had a good understanding of their concerns. I'm going to start meeting with the kiddos next and see what kind of support I can offer them.

Saturday, March 20, 2010

Remembrance Poem

It can be hard to decide what to do on the anniversary of a loved one's death. Some people want to treat it as a normal day, others want a memorial service, and the rest of us fall somewhere in between. A helpful practice I've found is to simply light a candle and read a poem of remembrance, either by myself or with others. It is a way of marking the occasion, taking a moment to honor your loved one and the loss you've experienced. I've passed out the following Jewish remembrance to my bereavement clients and to friends and family alike.

We Remember Them- Jewish remembrance

In the rising of the sun and in its going down,
we remember them.

In the blowing of the wind and in the chill of the winter,
we remember them.

In the warmth of the sun and the peace of summer,
we remember them.

In the rustling of the leaves and the beauty of autumn,
we remember them.

In the beginning of the year and when it ends,
we remember them.

When we are weary and in need of strength,
we remember them.

When we are lost and sick at heart,
we remember them.

When we have joys we yearn to share,
we remember them.

So long as we live, they too shall live, for they are now a part of us,
as we remember them.

Friday, March 19, 2010

Geriatric Social Work Initiative

The Geriatric Social Work Initiative has a wealth of information for those working with older adults and their families. They are collaborating with social work programs to better prepare social workers working with this population. There's also a Faculty Scholars Program, Doctoral Fellows Program, and Doctoral Fellows Pre-Dissertation Award Program. They also post the latest research and information in the field of gerontology.

Hope and Empowerment Event

I learned about this fantastic event earlier this week but haven't been around to post anything since my explosion of posts on Tuesday. It's either fast or famine with me, apparently. If you're near Indianapolis this weekend, consider attending Hope and Empowerment, a free event through the Henry Tucker Foundation for those affected by pediatric cancer. Tonight features an early screening of the movie "Letters to God" which opens April 9. I hadn't heard of the movie yet but it sounds fantastic. It's about a young boy with cancer who writes daily letters to his penpal, God. A postman comes across the letters and, not knowing what to do, befriends the family and tries to figure out how he should respond. "Inspired by a true story, Letters to God is an intimate, moving and often funny story about the galvanizing effect one child’s belief can have on his family, friends and community." There's a host of great speakers filling up the rest of the weekend. I wish I could go myself but it's my best friend's 30th birthday so, as one who has gone before her, it is my duty to help her break it in.

Tuesday, March 16, 2010

Is long term care insurance a scam?

I've worked with a few families in the last year that have had long term care policies. In theory, long term care insurance provides the ability to pay for home care or assisted living costs and protects loved ones from the burden of caregiving. Just like any insurance policy, you hope you'll never have to use it but it's better to be safe than sorry. The Long Term Care Insurance National Advisory Council has good information on statistics, policies, and more. They include this fact: "In 1994, 7.3 million Americans needed long term care (LTC) services at an average cost of nearly $43,800 per year. By 2000, this number rose to 9 million Americans at nearly $55,750 per year. It's currently near $75,000 per year. By 2030 those needing LTC will skyrocket to 23+ million Americans, with projected, individual long term care costs reaching $300,000 annually per individual!" However, this does not account for the number of family caregivers who either choose to care for their loved one or cannot afford in-home care and do not want to place them in a nursing home. This also does not compare usage of hired caregivers vs. nursing home vs. assisted living placement. Anecdotally, it is less expensive to hire a 24 hour caregiver than it is to place someone in a nursing home; people tend to do better in their own home out of familiarity.

People spend years paying their LTC insurance premiums, with the premiums increasing due to age or higher percentage of claims. What happens when they finally want to access care? My experience has not been good because of the many limitations and paperwork. It seems, in the end, that long-term care insurance is just like any other type of insurance company. In order to be compensated, the patient must qualify according to the insurance company's qualifications. They look at 6 of the Activities of Daily Living, including bathing, dressing, eating, toileting, incontinence, and transferring. If a person can do these things, then their claim will not be paid. I had a patient with cancer that could do all six, some days better than others, but was at a higher risk of falling; the insurance company would not agree to coverage even though she needed care. Finally, once she needed assistance with transferring, they agreed to 6 hours a day, 3 days a week. Anything outside of that, the patient would have to cover. When I say that they covered those 18 hours, I mean they covered the maximum daily benefit and the patient was liable for any additional costs. Most policies will cover up to $50-100 per day (the national advisory council says the maximum daily benefit can go up to $400 but I would imagine you pay through the nose for that policy!) You are then responsible for the rest. There are often limited benefit periods as well so if you need care for more than the 3 or 4 years in your policy, you are again on your own.

Let's say that you're fine with the limitations of your policy. It's time to access care. Here are your choices. You can hire a caregiver through an agency. That means you can't hire anyone privately- just a licensed and bonded agency. The agency must provide a plan of care and fill out at least 1 portion of your claim paperwork. In my area, agencies seem to have less 24 hour caregivers or are pushing families to hire 2-12 hour caregivers instead, which drives up the cost. This is another consideration because it'll be a greater out-of-pocket expense. Or you can go to a nursing home, which the policy may reimburse at a higher maximum daily rate. Or you can go to an assisted living facility...for a little while at least until you need a higher level of care, in which case you're right back where you started. Any residential group homes are excluded because they do not have the type of licensing required by insurance companies. This is a true pity because those places have some of the best caregivers and often wonderful, homey environments and opportunities for socialization.

Once you've decided which option best suits you, the paperwork parade begins. You'll mail in your initial claim generally after the first month of care but it could be another 60-90 days before you'll receive your first reimbursement check. So you'll need to have more money upfront in order to pay for the care you need.

Recently I went over a patient's long term care plan with her daughter; the patient had a long term care insurance policy. The patient could no longer live independently but she had a small dog so nursing home placement was out. The daughter decided to look into hiring a caregiver and as she made phone calls, she found out the insurance company would pay $50 a day, barely making a dent in the cost of a caregiver. The daughter wasn't satisfied with the caregiving agencies she spoke with. A friend told her about a group home in the area; the daughter visited the group home and loved it- plus they agreed to take the patient's dog too! She spoke with the insurance company but they would not reimburse care because the home doesn't have the "proper" license. The daughter decided they will just pay privately anyway. This patient is lucky in that she has a good retirement account and can afford to pay privately. Many people are not in the same position.

Now I'm not saying you shouldn't look into long term care insurance. LTC insurance is recommended for anyone over 40. I'm sure it works out perfectly well for some people. I think the costs and limitations need to be considered. Personally I would recommend you start a separate account or CD and deposit your "premium" there instead. That way you can access care when you need it and you can choose whatever option works best for you, not the insurance company. And if you never end up using the money, I guess it'll be a nice inheritance for your family.

Has anyone had a positive experience in accessing long term care insurance? Do you have your own policy?

Katie's Comforters Guild

I just stumbled across an awesome opportunity for anyone living in Seattle or who'd like to financially support a good cause. Katie's Comforter Guild brings comfort to sick children at Seattle Children's Hospital by making handmade blankets for them. The guild's inspiration is Katie Gerstenberger, who was a patient at Seattle Children’s Hospital, and sadly died in August 2007. Her mom's handmade blanket from home was a great comfort to her during her treatment for cancer. You can help by sewing, knitting, crocheting, or making fleece blankets. Due to infection-control issues, only newly-purchased, newly-made items can be accepted- that means no used blankets or materials. You can deliver your blanket to SCH's Volunteer Office or mail it there; look at the blog for more information. Donations or gift cards (preferably to national chain fabric stores) are also appreciated.

The guild's president is Katie's mom, Karen, who has a personal blog. In the little I've read so far, I have been impressed by her honesty and vulnerability regarding her grief over the loss of her daughter. Consider this post on transforming pain lest you transmit it to others. I would hazard a guess that this is partially how Katie's Comforter Guild came to be. She also writes a sweet letter to Katie on what would have been her 15th birthday.

Happy Social Work Month!

In honor of Social Work Month 2010, here's a fantastic post by Ken Covinsky at GeriPal that explains why Social Worker Are Awesome. I wish it was required reading for everyone in the medical system! Be sure to tell the social workers around you that you appreciate what they do and that they're a vital part of the team. We eat that stuff up!

Saturday, March 13, 2010

Complicated Mourning conference

I thoroughly enjoyed my time in Ft. Collins, CO at the beginning of the month. Alan Wolfelt was exceptional, as always. "Understanding and Responding to Complicated Mourning" exceeded my expectations- so much good information to process! The training was not held at The Center for Loss and Life Transition this time. I had so been looking forward to the peaceful retreat but there is some construction going on in the area so we met at a conference center instead. When Kerri emailed about the change in location, I pictured some cavernous room that would not be conducive to learning, at least not in line with Alan's vision for these trainings. However, we were in a small room, complete with an eating area. It may not have been the Center for Loss but it worked well for our group. It turns out that it's the people that make the training, not the location! Alan keeps the trainings small so there were 16 of us, including a woman who was at the Comprehensive Bereavement training I attended last May. Such a variety of backgrounds! I think I was the only social worker- there were hospice volunteers, chaplains, bereavement coordinators, and even a nurse. And there was even someone my age this time! I'm so used to being the "young'un" wherever I go. There's such a sense of intimacy in these groups because of what we do but also the stories we share. Alan creates a safe place for us to share not only our personal losses but also the teaching moments with the clients we serve.

Some take-aways from the training itself:
Alan uses the term "Complicated" instead of Abnormal, Pathological, Atypical, or Unresolved when it comes to grief. Complicated is a hope-based term, whereas the others indicate something gravely wrong and unlikely to change. Grief, as a reminder, is an internal process and by it's very nature is complicated. Mourning is an external process, or "grief gone public," and influences change and movement. If someone is unable to mourn a loss, for whatever reason, their grief often becomes complicated.

The factors that naturally influence complicated mourning are the circumstances of the death, survivor's psychological traits (i.e. personality), survivor's relationship with the person that died, survivor's inability to express feelings (grieve but don't mourn), and family systems issues.

There are 4 categories of complicated mourning. In Absent Mourning, no apparent feelings of grief are expressed, often resulting in emotional, physical, and spiritual turmoil. In Distorted Mourning, a heightened response occurs in one of the normal dimensions of grief and does not soften over time. Anger, guilt, depression, and anxiety are the most common. With Converted Mourning, the person attempts to go around grief, instead of through it. The person may demonstrate behaviors and symptoms resulting in personal distress but are unable to trace their presence to the loss, based on whatever "avoidance response style" they are using. This may be due to our mourning-avoidant culture, a high need for self-control, lack of long-term support, or an intolerance for pain or feelings of helplessness. Hurting is part of healing; if this is suppressed, absent mourning occurs. In Chronic Mourning, the acute symptoms of grief do not change over time and there are conscious or unconscious efforts to keep the dead person alive. This is often inappropriately applied to people- some denial can be normal and healthy when a loss occurs. We tend to dose ourselves while mourning a loss- a little bit of pain here and there as integrate the loss in to our lives.

Dying to learn more? Go to a training for yourself! Alan and his staff seriously pamper everyone who comes to a training. It truly is a nice getaway, combined with an excellent educational experience. Sadly, Alan may not continue these trainings past this year so it's best to sign up for the trainings left in 2010. Go to the Center for Loss website to see the training schedule and find out if any spots are left. I'd love to go to a couple more trainings but I'm not sure I'll have time or money to get back before the year ends. Personally, I'm praying that Alan will figure out a way to continue doing this one way or another. If you can't go, then at least check out Alan's many, many books- a virtual treasure trove of information. I was particularly impressed with one of his latest: Healing Your Grieving Body: 100 Physical Practices for Mourners. It's filled with soothing tips.

Monday, March 08, 2010


A thought-provoking article from Patheos: William Stuntz, a professor at Harvard Law School, discusses the impact of faith in his life. He has had chronic pain since 1999 and was diagnosed with cancer in 2008, now not expected to live through this year. I did not catch any mention of hospice but I hope he has the support of a hospice team, especially since he stated, "cancer deaths are ugly, and I assume mine will be ugly and painful and very, very unpleasant"- yikes.

Some of my take away quotes:

"These conditions, both of them, become very quickly a part of one's identity. Chronic pain and cancer are not just things that have happened to me. They are things that I am. Part of me rebels at that. I want to be more than a cancer patient and chronic pain patient. But I cannot be less than a cancer patient and a chronic pain patient. Those are large parts of my life. They are part of who I am. Although I would love to have my pain and my cancer removed tomorrow, that would not be an easy thing. I would have to learn how to be somebody else. If God decided simply to free me of these conditions, I wouldn't just wake up in the morning and be deliriously happy. It would be a struggle. These things have been a part of me, a part of who I am. I have learned how to live alongside them and through them. Then I would have to learn how to live without them. I wouldn't know how to do that anymore."

"I will probably not survive 2010. Yet that message is much easier to take than I would have expected. I don't fully understand why. I would have thought that the knowledge that I am very likely in my last year of life would lead me to dwell on the dying. A certain amount of that is unavoidable. Death hangs in the air. It's as though I am living with an hourglass right in front of my face. You cannot look away from it. You cannot close your eyes to it. It's always there. But actually I think it has led me to dwell more on the living."

"It hurts when my wife becomes sad because she wanted us to grow old together. We are not going to grow old together. She feels anticipated pain over my coming death, and seeing her feel the pain of that, that's hard."

Sunday, March 07, 2010

Palliative Care Grand Rounds 2.3

Larry Beresford has posted the latest edition of Palliative Care Grand Rounds. PCGR is always chock full of good info and blogs related to hospice, palliative care, and bereavement. Enjoy!

Saturday, March 06, 2010

In Honor of Spring Training

I love finding a connection between work and baseball. A Chicago Tribune article last summer alerted me to the latest in eternal resting places. We all know I'm not a Cubs fan but I have to give props to Beyond the Vines for creating "eternal luxury skyboxes for Cubs fans." The 24-foot-long brick monument, located at Bohemian National Cemetery, is designed to look like the ivy wall at Wrigley and holds 280 niches, aka eternal skyboxes, and the MLB-approved urns have the Cubs logo on them.

We White Sox fans might not have our own version of Beyond the Vines but I think this story is even better. My good friend Brooke was blessed to be born into a family of die-hard White Sox fans. Her dad Tom never missed a home opener until he died during our sophomore year of college, a little more than a month before the 2000 season was to begin. That's when I started going to the home openers with the family, in his honor. The White Sox organization sent a special letter to Brooke's mom acknowledging the loss of a super fan and also paid tribute with a message on the scoreboard during the 4th inning. Fast forward to 2005. After congratulating ourselves on having partial season tickets for an incredible year of baseball playing, Brooke and I tried our hardest to get tickets to the World Series but didn't get through on Ticketmaster and neither of us could afford the scalpers' prices. However, her uncle managed to be invited by a friend. Before Game 1 started, he surreptitiously spread a little bit of Tom's ashes on the field for good luck. And what do you know? We won that game and continued on to sweep the World Series! (Note: In general, it's a good idea to ask permission before spreading ashes on private property or in public places; if you don't have it in writing, it could be considered a misdemeanor. White Sox officials were notified about Brooke's uncle's actions when the Chicago Sun ran a World Series-related article. As I recall they didn't seem too stressed about it but they also didn't want a mass spreading of cremated remains either. Other interesting places people spread ashes.)

You might want to shake your head and say, "only in Chicago" but, actually, the Phillies' urn was the first to be designed. People have been tying their final arrangements to their baseball (or football or basketball or...) allegiance for years. It only makes sense that someone would capitalize on this service. Do you know of any other sports-related memorial stories?

Tuesday, March 02, 2010

Free at Last!

A new patient was admitted one night and I planned to see her that morning since it sounded like she might only last a few days. However, you know what happens to the best laid plans. The hospice CNA was visiting and let the hospice RN know the patient was a few breaths away from dying. I arrived at the facility to find out the patient had indeed died; they were in the process of notifying the family. The daughter came to the room shortly thereafter and went straight to her mom's bedside.

"Oh, Mom- you did it! You're finally free!" She was tearful but smiling. Not the reaction you might expect but as I learned more about the patient and her loving family, it was so fitting. The patient had Alzheimer's and per the family, her quality of life was very lacking. The patient had watched her sister die from Alzheimer's 10 years ago and thanked God that she seemed to have escaped that fate. Only it was not to be and the family watched in horror as a once vibrant woman became lost and confused. As the family gathered, they all echoed the sentiment that this woman was finally free of her diseased and dying body and now in heaven with a perfect body.