Sunday, January 31, 2010

Poll results

Thanks to all who voted in the poll.

The top 3 vote-getters were:
1. Patient/family stories
2. Social work/therapeutic techniques
3. Bereavement work

Friday, January 29, 2010

After Words

Losing a loved one is difficult no matter what the circumstances. When a life limiting prognosis is known, it is helpful to make funeral arrangements ahead of time. However, important financial decisions do not end there. This list is a road map of basic actions you or a designated third party will need to take during the first few months after the death of a loved one.

1. Collect the Necessary Papers
  • Death certificate. The funeral director will provide a certain number. You can purchase additional death certificates through the funeral director or the county health department. At least a dozen certified copies of the death certificate is recommended. Most companies will want a certified copy but use a photocopy when able to save money.
  • Marriage certificate. Available from the county clerk where the marriage license was issued.
  • Birth certificate(s). For the deceased and any dependent children. Available at either the state or county public records office where the person was born.
  • Social Security number(s). For the deceased, spouse, and dependent children.
  • Discharge papers. If the deceased served in the military, a copy of the discharge certificate is needed. If you do not have a copy, contact National Personnel Records Center (9700 Page Boulevard, St. Louis, MO 63132-5200), at the attention of the branch in which the deceased served.
  • Original will. The lawyer who wrote the will may have it or it may be with the personal belongings of the deceased or in a safe deposit box. Be aware that some banks have special procedures before letting anyone in to the safe deposit box.
  • List of property. Complete list of what the deceased owned including real estate, stocks, bonds, bank accounts, deeds, and personal property.
  • Recent income tax returns. If the most recent income tax return cannot be found, you'll need to fill out IRS Form 4506. There is a $57 fee. You'll also need to attach documentation that you are authorized to act on behalf of the deceased, such as letters from the probate court.
  • Find bankbooks or account statements, stock certificates or investment account statements, and insurance policies.
2. Contact Insurance Companies
  • Contact each insurance company to notify of your loved one's death and find out how to claim the policy benefits. Ask what forms will need to be filed.
  • Each company will need a statement of the claim and a death certificate before the surviving spouse or dependent children can receive benefits. Keep copies of all correspondence. If you speak with a claim representative by phone, note the representative's name, date and time that you called, and what was discussed.
  • In addition to life insurance, find out if other forms of insurance covered the deceased. Some loans, mortgages, and credit card accounts are covered by credit life insurance, which pays off account balances. Notify these companies immediately.
  • If you can't find the individual policies among the deceased's papers, look at the checkbook or paycheck stubs for premiums paid.
  • Generally, life insurance proceeds are paid directly to the named beneficiary. Most companies offer to pay the benefits in a lump sum or as fixed payments over time.
  • If the deceased was listed as a beneficiary for your own policy, you will need to change the listed beneficiary.
  • Policies on properties and autos should be changed to the survivor or heir's name.
  • If medical insurance was formerly obtained through the deceased's employment, find out immediately if you are still covered and for how long. If you are no longer covered, ask about options open to you now.
3. Notify Social Security
  • You will need to contact Social Security if the deceased was already receiving Social Security benefits. If a Social Security check arrives after your loved one has died and it is payable to the deceased only, it must be returned. If it is made out to the deceased and surviving spouse jointly, take it to the Social Security office so that it may be stamped "Payable to Survivor."
  • There is a one-time Death Benefit of $255 on the worker's record, payable to the deceased's widow or minor children.
  • Survivors Benefits may be available to the surviving spouse, dependent children up to age 18, and in some cases dependent parents (over age 62, you must provide at least half of their support.)
4. Claim Benefits
  • Veterans benefits. The VA provides burial benefits, including a grave at a national cemetery, the opening and closing of the grave, government headstone or marker, and burial flag. Cremated remains will also be buried or interred. The deceased may also be eligible for a burial allowance. For information on benefits, including those for surviving spouses, contact the Veterans Administration at 1-800-827-1000. Forms can be found at
  • Employee benefits may be available; check with the deceased's employer.
  • Unions and other professional organizations provide benefits as well.
  • Social Security Death Benefit. See above.
5. Begin probate if needed
  • Probate is the court-supervised process of paying the deceased's debts and distributing the estate to the rightful beneficiaries. It may take up to a year to complete so attorney may be helpful. Jointly owned property, property in trust, and assets with a designated beneficiary (i.e. life insurance, 401(k), pensions) do not go through the probate process. If the will is relatively few assets, debts, and only one heir, it will probably not require probate.
  • If the deceased did not have a will, state law determines how the assets and property will be distributed to family members. The court will appoint a personal representative or the executor to manage the deceased's affairs. Contact the probate court in the state where the deceased lived for details.
6. Additional Details
  • Advise all creditors in writing of the deceased's death. This includes credit card and loan companies. Remember, some loans, mortgages, and credit card accounts are covered by credit life insurance, which pays off account balances.
  • See a tax accountant or lawyer. Federal law often requires that an estate tax return be filed within 9 months of the death. Since tax laws are constantly revised, seek out expert service to find out the full tax liability. The surviving spouse may still file a joint tax return noting the deceased's spouse's death that year. The surviving spouse may also claim the death benefit exclusion on the income tax return.
  • Notify banks to change the name to the survivor's only. Ask the bank to release joint bank account funds to you. In some states, joint bank accounts are automatically frozen upon the death of one spouse. If the account is in the deceased's name only, no one may access it until an administrator is appointed.
  • Notify retirement plan administrators of the deceased's death.
  • Change the title on joint assets. Revise your will.
  • If you have dependent children in college, ask them to visit the financial aid office. They may be eligible for increased aid.
  • Motor vehicle. One vehicle is automatically the survivor's property but when the registration expires, you will need to bring a copy of the death certificate, vehicle title certificate, and new insurance form in your name to the Department of Motor Vehicles. They will supply the necessary forms to fill out. Any additional vehicles must go through the estate.
  • Stocks, bonds, and investments. Notify the broker or banker of the death and ask for any appropriate forms. Leave decisions about investments for later, if able.
  • Keep a record of any bills paid and funds received. If you need extra time paying current bills, notify the company as soon as possible.
  • If you have any minor dependents, you must have yourself appointed as custodian of their property, i.e. stocks or bank accounts. The guardian listed in your will should also be updated.
  • Sale of property. If you are able to postpone decisions about selling, please do. Review all options carefully. Avoid people who want to "make you rich."

Updated list of Hospice and Palliative Medicine Blogs

Christian Sinclair has updated the list of Hospice and Palliative Medicine Blogs over at Pallimed. Make sure to check them out, comment often, and let Christian know if you have a blog in that category. I personally would love to hear from hospice social workers, chaplains, and bereavement coordinators.

Tuesday, January 26, 2010


Just a reminder that my poll (top right hand of this page) will end Friday. I get way more than 12 hits a day so to all you! Otherwise you will be stuck with my current posting whims!

New Kiddos and Cremation

I started working with 2 kids the other week. Their mom met me outside the house when I arrived tonight. She let me know that the prognosis for her husband is now a week. She let me know what the kids knew. She talked about how she was doing. As we shivered outside, I couldn't help but wonder if I will be in her shoes someday. If I ever get married, will I have to deal with then losing my husband early to cancer? Will either of my parents face disease? Will I be the patient? This woman couldn't have imagined when she said, "I do" that she would bury her husband 10+ years later. And there I was trying to offer what comfort I could. My gift to this woman is my ability to be there for her children. It seems that her daughter talked all day about getting to see me again. She also gave me a personalized drawing for my fridge. Neither child wanted to talk much about their dad's decline and I respected that. They are too young to understand the ramifications of what it means to bring a hospital bed in to your home or needing more pain medication. I'm glad that they still have this innocence for now.

The mom was also looking for help in explaining cremation to the kids. I gave some basic guidelines and a copy of Alan Wolfelt's "Helping Children Understand Cremation." I only differ from Wolfelt in that he recommends saying "The heat burns away all the parts of the body except for some pieces of bone." I wouldn't recommend talking about the body burning, as it won't sit well with most kids, even when they are told that the person is dead and being cremated won't hurt them. Instead I would recommend something more along the lines of "The heat turns the body into ashes." If children want more of an explanation, they'll ask for it. Some will want to know more than others and you can tailor your response to their age and level of understanding.

Saturday, January 23, 2010

Rainbows Online Facilitator Training

I recently learned about a new training program through Rainbows, a nonprofit that works with children dealing with death of a loved one, divorce, family member deployment, incarcerated loved one, or another significant trauma. Rainbows began in 1983 in the Chicago area and has since grown to reach over 2 million participants in the United States and other countries around the world.

The Online Facilitator Training Program was designed to train social workers interested in working with grieving children and teens. It's a 5 hour program that can be completed at home or work. Users have 14 days to complete it so if you don't want to complete it all at once, you don't have to. The program has been designed to engage the user and offer a one-on-one learning experience, imparting the Rainbows philosophy and methodology. It also includes a closing examination of learning content. The $125 cost includes a free download of the Facilitator Listening Module. This is a great resource for anyone working with children and teens. I know I'm always looking for new activities and ideas to reach out to my clients.

Included in the training: extensive presentation on grief, instruction on active and attentive listening skills, evaluation of small group sessions and real-life scenarios (streaming video), training in specific areas of interest, interactive exercises and quizzes, and downloadable resources for continued support and training.

Stay tuned for this site's first guest post from Rainbows' founder and a social worker on the board...

Traveling to Provence

My traveling patient was on the move last night, this time to the French countryside of Provence. I tracked down a wonderful DVD at the library "Visions of France: Provence" and a CD of French music, naturalmente. The patient invited the hospice team, his wife, and a family friend to join him for a Provence-inspired dinner. I whipped up a tarte, rice, and zucchini (recipes found on that had the unifying ingredient: Herbes de Provence. His wife made Shrimp Provencal and a French dessert. The guests brought various French contributions. It was a wonderful evening. The patient was thrilled with his travels but succumbed to jet lag towards the end of the night. Next stop: Mardi Gras!

Sunday, January 17, 2010

Hospice Patient Blogger Dies

It is with sadness that I let you know that Judi, of Life as a Hospice Patient, died last night. She was featured several times in Palliative Care Grand Rounds this past year. We in the hospice and palliative care community are indebted to her for her honesty and willingness to share her experience as a hospice patient. She was an activist throughout her life apparently and this role continued as her health declined. Go to her blog for details on her final hours and where to direct contributions.

Saturday, January 16, 2010

On-call visit

Fresh back from vacation, I've been on-call today since 8 this morning and have10 1/2 hours to go. Not that I'm counting. Since the phone has been quiet the last few times I was on-call, I figured my time was about up. And I was right. The phone rang this afternoon and I answered with resignation. Most on-call visits deal with caregiving needs, a death at a facility (if the RN is busy and a family requests support), or the dreaded emergency respite situation. When I first get called, I dread what I'll be asked to do, mostly because I hate being on-call. However, I'm usually glad that I could help the patient/family once the visit is over. This time when the triage RN called, I breathed a sigh of relief because the situation was right up my alley: a bereavement visit. I met with the widow for over 3 hours and probably could have stayed longer. She just needed to talk. Her husband died yesterday and the reality is hitting her now. I told her about follow up through our bereavement program, ie support group or bereavement volunteer. She said it had been so helpful talking to me, she actually asked if I could be her bereavement volunteer. I explained that I wouldn't be allowed to but I was sure we could line up a great volunteer for her. I walked away knowing that I had made a difference in that woman's life. Think bereavement is my calling?

YourStory, Inc. resource

Isabel and David Andrews believe that everyone has a story to tell. They began their company YourStory, Inc. in order to preserve those special memories, using the customer's own words and pictures. Options are The Tribute (created through several interviews with people whose lives have been impacted by the tribute subject; a mock newspaper style article is created and comes beautifully matted and framed), Milestones (your reflections on your happiest moments or the situations that made you in to the person you are today are captured in a classically-bound book), and Life Story (an elegantly-bound book is written from three to four hours of in-person interviews; sections can include themes such as childhood, finding your vocation, meeting your spouse, and life-changing events.) The Milestones and Life Story options also include a rough, unedited audio CD of the interview(s). These look like lovely keepsakes, ultimately priceless but perhaps pricey upfront. The owners are based in Naperville, IL and the website does not state how far interviewers will travel; it's safe to assume that most clients are from the Chicago area.

Thursday, January 14, 2010

Caseload Recommendations

I recently wrote about my unusually low caseload, prompting a question from "anonymous" about state regulations on caseload maximums for hospice social workers. I'm not sure that states would regulate our caseloads; if such regulations exist, it seems something more along the lines of NHPCO or Medicare. Correct me if I'm wrong. About a year ago a coworker tracked down the NHO operations manual (from 1997) and copied the page on Productivity and Caseload Issues.

NHO issued the following general guidelines for staffing ratios:
  • Nursing. Caseload of 8-12 patients per FTE (full-time employee); range of 15-25 visits per week
  • Social Work: Caseload of 20-30 patients per FTE; range of 15-25 visits per week
  • Chaplain: Caseload of 40-60 patients per FTE; range of 15-25 visits per week
  • Home Health Aides: Caseload of 7-10 patients per FTE; visit length ranging from 1.5 to 2.25 hours
Affecting caseloads are the following factors: geographic location/travel time, patient acuity, limitations/stress level of primary caregiver or other members of the immediate family, and the extent of staff roles and responsibilities that conflict with direct patient care time (i.e. IDT meetings.)

The 2009 NHPCO Facts and Figures: Hospice Care in America report: "In 2008, the average patient caseload for a home health aide was 9.5 patients, 13.3 patients a nurse case manager, and 24.2 patients for a social worker."

Are you aware of any other current caseload recommendations? Please let me know!

Since my brief reprieve before Christmas, my caseload has gone back up to around 37 and I know there are a couple more new patients coming down the pipeline. I also have the largest territory of all the social workers (and generally the highest caseload). There was a period a year or two ago that all the social workers were carrying caseloads over 40- the rest of the hospice team's caseloads were similarly impacted. It was too much but the administration said we'd have to keep the caseloads that high for at least a few more months before they would even think about hiring another social worker, much less other staff. Of course, we didn't sustain those high numbers for the required amount of time; we just had to make do. I hated doing that to the rest of my caseload but new and high acuity patients always come first and my sanity last. The ebb and flow of caseloads is an ongoing issue. How do we provide quality care without sacrificing ourselves in the process?

Tuesday, January 12, 2010

The Big 3-0

I recently moved out of my 20s and took a trip with my mom to celebrate, hence my delayed posting. While I'm not entirely happy about turning 30 (not because of the age itself but because I'm not where I thought I'd be by this time), I'm determined to embrace it. As you can guess by this blog's title, at the very least I'll never look my age. Hopefully this official age will reassure my patients in the face of my youth.

It's been about a year since I changed this blog from a personal and professional perspective to professional-only. It's been neat to be featured on various Palliative Care Grand Round issues (check out Pallimed for the latest) and gain more professional contacts and readers in the process. I can guarantee that I never thought I'd be in this position when this blog first began. So thank you, readers, for sticking with me.

I've come up with a poll on the top right side of the page. I'd like to see what you all are interested in hearing about. Please take a minute to choose which topic you'd like to see featured more often. The poll will be up all month so do as Illinoisans do- vote early and often. (OK, we don't all do that in this great state but with another primary election drawing near, I couldn't resist!)

Friday, January 01, 2010

While My Sister Sleeps review

I've never read Barbara Delinksy before but the premise of While My Sister Sleeps was enough to reel me in. Reader beware, there may be some spoilers but I don't think it will detract from your reading. Molly Snow has always lived in the shadow of her older sister, Robin, who is a determined runner bound for Olympic greatness. On a day Molly was supposed to support Robin on a run, tragedy strikes when Robin is found unconscious on the roadside by another runner. After being admitted to the ICU, it is determined that 32 year old Robin had a massive heart attack that deprived her for oxygen for too long and left her brain dead. The family reacts in a variety of ways: her father Charlie tries to be the silent supporter, her brother wants Robin off the life support, her mother Kathyrn believes Robin will come out of this and can't face the alternative, and Molly wants to do what Robin would have wanted, even though she doesn't know what this is (highlighting again the importance of discussing your wishes and filling out Advance Directives at any age.) The novel takes place over 6 days. Secrets are revealed and bonds are tested as the family grapples with difficult decisions and faces letting go.

From the beginning, it is pretty clear that Robin will not survive this. I've never worked in an ICU but this appeared to be a realistic portrayal. The hospital social worker even gets to play a part! My one gripe with that is that when Molly wants to ask about the process for organ donation, the social worker is not available because it's the weekend. The one thing I can figure out is that this is a small hospital so maybe they do not have on-call social workers...but still! Delinsky makes good use of her audience by educating readers on organ donation. The need and value for organ donation is clear and Delinsky takes the opportunity to clear up myths and assumptions. For instance, the nurse points out that great care is taken so that organ donation does not lead to disfigurement.

The mother Kathryn goes from complete denial regarding her daughter's condition to accepting that nothing more can be done. The possibility of keeping Robin on life support is addressed. As a runner she was used to being a vital, energetic person. They come to see that Robin is no longer with them, just her body, a shell. Still, it's not an easy decision. Consider this conversation between Kathryn and Charlie:
"It's the cost of having a life worth living. Choices are easy when you have nothing to lose. Would you rather have led that other kind of life?" She was feeling perverse enough to say yes, when he added, "You couldn't do that, Kathryn. It's not in your nature. I've always loved your determination- the wholehearted way you go at things."
"But now I'm giving up," she said in self-reproach. This was the frightening part of accepting what was happening. Giving up was a betrayal.
Charlie answered with startling force. "No, Kathryn. If anyone has fought these last few days, it's you. No, it's not about giving up." His voice gentled. "It's about letting go, and I say that in the most positive sense. At some point, you'll decide there's nothing else you can do and that hanging on only brings more tears."
"Have you reached that point?" Kathryn asked.
He was silent, his eyes troubled. "I want to start remembering Robin the way she was. That'll only happen when this is done." (page 272)
The conversation continues from there. In the end, Kathryn makes the decision to stop life support. In fact, she pushes the switch. (To any ICU workers, does the family member actually do that? I always thought an MD or RN had to do it.) The book ends as the family begins to mourn. Delinsky handles the medical and emotional implications of her characters' journeys well.

I'm so glad that authors are addressing difficult issues through their work. In this novel alone, Delinsky also touches on anorexia and Alzheimer's with the subplots. Kristin Hannah's Firefly Lane provides education on detecting inflammatory breast cancer. She also started the Firefly Fund as a way to give back. Both books may induce tears but they're well worth it.

Chemo according to Freakonomics

I was excited to learn that Freakonomics authors Steven D. Levitt and Stephen J. Dubner released a follow-up: SuperFreakonomics. If you don't see how economics could ever be interesting and/or relate to your life, these books are for you. Freakonomics promised to explore the hidden side of life, answering questions like, "What do schoolteachers and Sumo wrestlers have in common?" and "Why do drug dealers still live with their moms?" The response to the book was so great that the authors began a blog to keep the conversation going. I could only imagine what the authors would unearth when they wrote SuperFreakonomics but I didn't figure it would end up relating to me or my work. Then I came upon chapter 2 "Why should suicide bombers buy life insurance?" I'm not going to let you in on how chemo relates to this intriguing question; you'll have to read it yourself.

The authors discuss how most people want to prevent death at any cost. For those of us in the palliative and hospice worlds, this is nothing new. When it comes to cancer, chemotherapy and/or radiation are givens. (Anecdotally, it seems like most people just go along with whatever the oncologist says, without doing their own research or looking at or asking about treatment outcomes.) Most pharmaceutical sales are for chemotherapy. Chemo has been proven effective for the following cancers: leukemia, lymphoma, Hodgkin's disease, and testicular, especially when detected early. However, chemo has not been proven to be effective in most other cases of cancer, per Leavitt and Dubner. (Levitt and Dubner derived much of this section from interviews with practicing oncologists and oncology researchers, as well as articles and studies.) In fact, chemo has been shown to have no discernible impact on multiple myeloma, soft-tissue sarcoma, melanoma of the skin, and pancreatic, uterine, prostate, bladder, and kidney cancers. Yet, we can probably all identify people with these types of cancer who received chemo. My Grandma had multiple myeloma and was given chemo. I remember at the time thinking it was a small world, as the form of chemo she was given was ultimately developed through money raised by The Leukemia and Lymphoma Foundation, with whom I had fundraised for the year prior. It was a newer drug so maybe the oncologist was not off-base in trying it...God knows we were all grasping at straws of hope when she was diagnosed.

According to the book, cancer patients make up 20% of Medicare cases but use 40% of the Medicare drug budget. A typical chemo regime for non-small-cell lung cancer costs over $40,000. Consider that it will extend a patient's life by an average of 2 months. For that patient and his or her family, the costs and ravages of chemo might be worth an extra 2 months. But it might not. And how many patients are told the outcome prognosis upfront? The authors ask: "Considering its expense, its frequent lack of efficacy, and its toxicity- nearly 30 percent of lung cancer patients on one protocol stopped treatment rather than live with its brutal side effects- why is chemotherapy so widely administered?" Possible reasons include profit motive (oncologists are the highest paid doctors and they make more than half of their income from selling and giving chemo drugs; the other half of their income is ostensibly through surgery and radiation) and inflating survival-rate data. Or being overconfident in the efficacy of chemo. "'If your slogan is 'We're winning the war on cancer,' that gets you press and charitable donations and money from Congress,' [Tom Smith] says. 'If your slogan is 'We're still getting our butts kicked by cancer but not was bad as we used to,' that's a different sell.'" A final reason is that oncologists are only human who have to tell other humans they are dying and that they can't do anything to stop that. This is certainly a contributing factor to why we get so many late referrals to palliative care and hospice.

Even though chemotherapy has negatives against it, the authors deliver this good news: people who would have died previously of heart disease are now living long enough to die from cancer instead. Almost 90% of new lung cancer diagnoses are over age 55, with a median age of 71. Also mortality for people age 2o and younger has fallen by more than 50% and people aged 20-40 have a decreased mortality rate by 20%. The incidence of cancer for all age groups continues to rise, however.

So what does all this mean? It's certainly something to ponder as we work with our patients, those who are considering future treatment options or those whom have been told there are no options left. It's also good to be aware if and when you yourself are diagnosed with cancer. It brings quality of life issues into a new light. And in case you didn't find this interesting or relevant at all, you might want to consider chapter 4 (The Fix in in- And it's Cheap and Simple) and chapter 5 (What Do Al Gore and Mount Pinatubo Have in Common?) on hand-hygiene compliance in healthcare settings. My kudos to Dr. Semmelweis.