NOVEMBER 3, 2015
CAREGIVING THE CAREGIVER!
Having been a 22-year sole caregiver, it became increasingly tenuous to keep putting one foot ahead. Periods of burnout grew longer and deeper. Periods of recovery grew shorter and less regenerating. What to do?
* I dug deeper into my faith
* I learned to ask for help
* I arranged long-overdue breaks despite having little financial means to do so--a long weekend w/different friends
* I taught others how to be helpful to either my aging parent, or myself
Teaching others how to be helpful requires more energy and patience--yet another expenditure of precious energy...in the short run. In the long run, the payoffs became blessed respites, however brief, from the continuous caregiving demands.
Let's face it. There's little easy about caregiving. Most run from the possibility. A few stick around, some out of reluctance, guilt, necessity and/or love. For those few who enter a sacred commitment to be there for a beloved, there's no way out of the downward spiral of guilt is saying NO to yet another need, or resentment is saying YES, other than SETTING LIMITS. Teaching others how to be helpful and taking breaks illustrate some ways of setting limits. We've long tried to "do it all ourselves." The longer that tact is followed, bouts of caregiver burnout will most certainly follow.
So, how do you teach another to help?
As you go about your day, ideas will automatically pop into mind--you don't have to think about it. You'll be about to do something and the thought will occur, "gee I wish I had someone who could do this for me." WRITE THOSE POP-UP THOUGHTS DOWN! After doing this a few days, your list will grow to the point where you'll begin to notice the areas in your day-to-day life where you could use help: doing a load of laundry; getting groceries; picking up a prescription; organizing the bills into a timeline and budget; balancing your checkbook... Or how about just a friend asking to drop by to have a cup of coffee?
The next step is ASKING.
Most find this so uncomfortable that they'd rather have a tooth drilled on without Novacain! EXPERIMENT. Ask just once. See how you feel after asking. Most will say "yes." Some will say "no." Just go on and ask another, relying on the truism that most want to help, they just are clueless to know how.
Let me know about your experiments. I call them "experiments in trust and truth."
Sue E. Fabian, JD, M.Ed,
Elder Law Attorney
APRIL 3, 2015
HOW TO KNOCK 75% OFF THE PRICE OF A CEMETERY PLOT!
Did you know? Cemeteries are not the only place that sell plots to their cemetery. Websites such as PlotExchange.com serves as a broker to match sellers and buyers. You'll also see many plots for local cemeteries listed on Craig's List. White Chapel in Troy, for instance, sells plots for about $2,900 each. You can by the same plot from the title owner to that little piece of real estate for $500-$1,000. To assure all is on the up and up, contact the seller, ask if s/he has title, then arrange to meet at the cemetery office to transfer title and make sure the cemetery office oversees that transaction. I didn't know anything about this until I came across a cemetery broker site in my prodigious reading. I began to investigate and confirmed that this is a legitimate practice. Just take the mentioned simple steps to insure a bona fide sale.
Now, for the punch line...
I have three plots for sale! I have clear title and will meet you at the cemetery office to transfer title. Why am I selling? Towards the end of her life, my mother more preferred to be buried next to her parents, yet there were no plots available near my grandparents. A cremation plan became necessary so her eventual cremains could be placed in a receptacle within a memorial bench, placed at the foot of my grandparents' graves. This dominoed into needing to move my father's body from White Chapel, have his remains cremated, and placed with my mother's ashes into the memorial bench upon her death. This opened up two otherwise committed plots. This third was to be for me. Now, I don't want to be at White Chapel by my lonesome! As if I would care at that point, but I have now converted to a cremation plan, opening up the third now available plot. If you are interested, give me a ring!
SUE E. FABIAN, J.D., M.Ed.
Elder Law Attorney
Certified in Gerontology
MARCH 27, 2015
IDENTITY THEFT AT TAX TIME!
Did you know that more advanced forms of identity theft include stealing your SSN to get your tax refund? This is one of the fastest growing forms of identity theft, now comprising 1/3 of all identity theft complaints. Culprits get your SSN by paying insiders to nursing homes or black market players to file your tax return before you get to it. Other forms of identity theft (IDT) are also on the rise: UTILITY IDT...stealing utilities accounts (electric, gas, water, cable, cell phones, landlines, internet, satellite TV), MEDICAL IDT...using your health insurance to get care, and CRIMINAL IDT...having false background check information in your record, preventing you from getting a job or a job promotion, a line of credit, a driver's license renewal, auto insurance, and anything else that's connected with your background. I obtained the following information from an on-line webinar sponsored by the Identity Theft Resource Center in San Diego CA on March 26, 2015. They have a 24-hour hotline that takes complaints nationwide.
What do to?
First, you must be knowledgeable about HOW IDT occurs:
THE OLD FASHIONED WAY: information is gleaned from lost or stolen wallets/purses, through theft by a family member or friend, by dumpster diving, through stolen mail, or buying it from a corrupt insider at a bank, hotel, car rental agency, nursing home or other business.
THE MOST SOPHISTICATED WAY: information is had by skimming (getting your credit card information from its magnetic strip), data breaches (wrong-doers steal a laptop in a car or from someone who has access to a data system), phishing (being conned on-line by authentic-looking email) or by hacking via malware, where harmful or unwanted software is insidiously installed on your computer without your knowledge that access your personal information like passwords and account information, or by logging your keystrokes and otherwise monitoring your computer's activity).
Second, you must promptly act to inform the right authorities:
1. contact all three major credit reporting agencies (Experian, Transunion and Equifax) and place a fraud alert on your account. Also ask for a credit report so you can see the particulars on the damage done.
2. Consider a "credit freeze," where you lock the entire world out, including yourself, from getting credit information until it is needed. I have had my account frozen now for two years. Only one time have I needed to "thaw" my account for 24 hours to allow the Small Business Administration to review my creditworthiness to get a disaster loan (re August 2014 Great Flood in SE Mich). After 24 hours, the account again became frozen. To me, it makes more sense to pay $10 to one of the credit reporting agencies to thaw my account than to pay a monthly fee for a credit monitoring agency to alert you after the damage has already been done.
3. Contact the business' fraud department where the fraud occurred. Instruct them to close the account.
4. file a complaint with the Federal Trade Commission (1-877-ID-THEFT or online @ www.ftc.gov/idtheft)
5. File a police report.
On this last item, some police reports have been reported to NOT take a report. Site state law requiring them to do so! Upon such education, most will take a report. In Michigan, the law is at MCL 780.754a re-printed here:
WILLIAM VAN REGENMORTER CRIME VICTIM'S RIGHTS ACT (EXCERPT)
Act 87 of 1985
780.754a Victim of identity theft; filing police report; jurisdiction; "identity theft" defined.
(1) To facilitate compliance with 15 USC 1681g, a bona fide victim of identity theft is entitled to file a police report with a law enforcement agency in a jurisdiction where the alleged violation of identity theft may be prosecuted as provided under section 10c of chapter II of the code of criminal procedure, 1927 PA 175, MCL 762.10c, and to obtain a copy of that report from that law enforcement agency.
(2) As used in this section, "identity theft" means that term as defined in section 3 of the identity theft protection act.
History: Add. 2004, Act 456, Eff. Mar. 1, 2005
© 2009 Legislative Council, State of Michigan
MARCH 24, 2015
KNOWING HOW TO INTERPRET THE WORDS OF THE DYING
Final Gifts is an exquisite book that decodes the enigmatic words of the dying. Birthing Death, the book I wrote, references this must-have book if you live with or work with those dying. If such language remains a total mystery to you, consider your own dream-state. Do the scenes and sequences of your dreams make linear and logical sense? Not to our rational minds. But there are so many other states of mind! Night dreaming and meditation access some aspects of mind that most of us never probe. Then there are those who are in the reality traversing this life and the next. No wonder their words make little sense to us! But if you know the individual and their life story, unlocking their mystery in at hand. Consider this passage:
Paul, a NASA engineer, was dying of prostate cancer. The author [hospice nurses Maggie Callanan and Patricia Kelley] met him one day when he had a seemingly puzzling problem...
"I'm trying to figure out how I can take the house and everything in it!", he said.
"Take the house where?" I asked.
"With me!" he said, seeming irritated and indignant. Elise's (his wife) eyes widened.
"Take the people in the house, too?" she asked.
"Of course!" he said.
"Is there anything we can do to help?" I asked.
"No, I have to do this by myself!" he said. Then he rolled over on his side and went to sleep...
(Elsie took the author aside as her daughter explained). "[M]aybe he doesn't want to leave us or this house. Did you know that he built it himself?" the older daughter asked.
Over the next week, Paul spoke to his family often and in great detail about his plans for taking his family and his house with him when he died--he'd dig up the foundation, seal off the water and gas lines, store food, and build a self-contained heating system.
Then one day Elise found Paul very quite...
"What's the matter, Paul?" she asked. "You're so quiet! Is something wrong?"
His eyes filled with tears. "It's neither practical nor possible," he said.
"I know," she said, holding him lose. "But we'll never forget how hard you tried," she went on tearfully. "We'll work together to take care of each other and your beautiful house. We love you and we're going to miss you. It'll be hard without you, but we'll be okay."
From that conversation on, Paul stopped speaking...he seemed very peaceful.
Never dismiss their apparent non-sensical words. In another wonderful source, watch Dr. Raymond Moody's discussion with the Swedenborg Foundation on the Words of the Dying: https://www.youtube.com/watch?v=kwUKMHyGar8.
MARCH 15, 2015
FREE PATIENT ADVOCACY WORKSHOPS
Wednesday April 1, 5:30p-7-, Waltonwood Assisted Living, 13 Mile just west of Woodward in Royal Oak.
Thursday April 23, 11a-1p, Clawson City Hall Community Room (425 N. Main St, Clawson MI 48071)
MARCH 13, 2015
YOU DON'T KNOW THAT YOU DON'T KNOW!
Your loved one has just asked you to be her patient advocate. "Sure," you unthinkingly reply. Yet, unless you work in the medical profession or have cause to challenge medical care, you have no idea what you are getting into! I learned by trial in in frying pan over 22 years of being there for my loved one. After a decade of being her patient advocate, I was nevertheless stunned to be confronted with situations where the learning curve continued to be steep!
Consider that there is no training for this job, anywhere. Few books are written on it. Yet, your loved-one's life could be in your hands and you won't have clue what questions to ask or what to do beyond the obvious. For instance, would you ever think to ask an orthopedic surgeon of the quality of parts s/he selecting to implant into your loved one? Have you heard the repeated commercial about defective hip implants? Bladder meshes? When I had something as routine as cataract surgery, I asked the ophthalmologist for the "make, model and year" of the lens implants and I called the manufacturer and asked if there were any recalls on the implant.
Crazy? Consider this. If you or your loved one were one of the unfortunates who received defective hip implants, how was it going through a total re-doing of the surgery? More post-op rehab? More home-care physical therapy? For a frail elder, the prospect of going through such major surgery again at worst could be the last straw. At best, it's a major and prolonged life interruption with unnecessary pain.
Who would think to ask such a "make, model, year" question? No one. Yet, if you are going to be a patient advocate, you'd better be prepared to look for the deeper questions. Much gets lots between the lines even in the best medical facilities. Ask any doctor or nurse you happen to know as a friend or family member.
MARCH 6, 2015
FREE WORKSHOPS ON PATIENT ADVOCACY!
YOU ARE INVITED to attend upcoming free workshops on how to be an effective patient advocate for your loved one: Saturday March 7, 10a - 11:30a Medical Powers of Attorney; Clawson Library.
Wednesday April 1, 5:30p -7p Patient Advocacy know-how; Waltonwood (13 & Woodward)
COME and learn the vital role you play in your loved-one's survival.
February 15, 2015
Hallelujah! I'm finally back! A techno geek I am not!!!
BEWARE OF NURSING HOMES OBTAINING GUARDIANSHIP
I recently read an article, "To Collect Debts, Nursing Homes Are Seizing Control Over Patients," explaining that to insure its payment, a "growing number of nursing homes" are filing petitions for guardianship to secure a patient's financial resources. Families who contest these guardianships can be taking on a costly fight. In one case, an octogenarian spouse fought a nursing home's guardianship attempts over his wife. He explained, "I'm trapped in a web of people and lawyers that will exhaust my 50 years of sacrifices and savings. Please, dear God, grant me strength and wisdom to take care of my wife." This dispute evolved from his questioning a sudden jump in his wife's nursing home co-insurance costs. The New York Times article concluded, "[t]he practice has become routine, underscoring the growing power nursing homes wield over residents and families amid changes in the financing of long-term care."
A word to the wise: Make sureyou look at each month's bill for any increases or unexplained charges, and quickly resolve what you can with the facility's accounting office. Whatever you cannot resolve should be taken to an attorney.
October 23, 2014
Reaching the UnreachableMy MSW intern, Justin Doud, offers another entry on his impressions on how to make a meaningful connection with another living in the fog of dementia.
Elderly with dementia can many times seem entirely unreachable. How do you talk to a loved one who can’t remember you, is often incoherent, completely unable to do any ADLS on their own, and barely able to move without assistance. The disease can reach such a severity that any tie to that person seems permanently severed. In the recent past, I admit I would have thought it hopeless. But recently, I’ve read up on therapy
interventions that have shown promise. Validation Therapy, developed by MSW Naomi Feil, uses touch and music to communicate with elderly dementia patients. Naomi describes the disorientation and seemingly irrational actions of many dementia patients as an attempt to communicate and resolve past issues once the normal processes break down. She describes them as undergoing four stages of behavior; malorientation; expressing past conflicts in disguised forms, time confusion; no longer holding onto reality and retreating inward, repetitive motions to compensate for a lack of verbal communication; and vegetation which involves completely shutting out the world and giving up on trying to resolve living. Naomi argues that the elderly with dementia are trying to satisfy needs, come to terms with regrets, and resolve any other type of conflict they may be having. While I can understand why somebody might be skeptical of such a theory/therapy basis, one should reserve judgment until they see it at work. Try looking at it this way, we all have unresolved issues, needs, and regrets. Just because one’s cognition is severely hindered, these would not simply vanish. And if one gets dementia before coming to terms with any of these, it’s not unreasonable to think these people would manifest these issues in different ways while trying to communicate in any way they could. Since patients with severe dementia have a lot of difficulty interacting in traditional ways, the therapy primarily involves the use of touch, soothing verbal communication, and music. In one video in particular, Naomi manages to get an elderly woman with dementia to sing “He’s Got the Whole World in His Hands”, when just moments before she was completely withdrawn. Validation’s premise is that human connection triggers our innate emotions through touch, facial expressions, body language, and music that survives even dementia. Music Therapy similarly taps these deep human reservoirs as it seeks to elevate mood and responsiveness in elderly dementia patients. Whether done in individual or in group settings, using an evocative song from one’s unique past is crucial. Music therapy’s results are often instantaneous. Similar to Feil’s work, elderly deemed hopelessly withdrawn are suddenly grooving and singing to the music. Afterwards, they are more interactive, give deeper responses, and better recollect. These stunning results are prompting hospice providers, nursing homes, and other long term care institutions to increasingly incorporate these modalities. I am of the impression that many of the old old (85+) with severe dementia are deemed by society as no better than lumps on a log. Of course, we do what we can to take care of their bodies, but the true social interactions are lacking. Comparable to how we need touch and receive intimacy as infants, impacted older adults also need that sense of connection in a way they can understand. Validation and Music therapy both have fantastic potential to help facilitate this. Hopefully, the research continues, and we can find even more ways to reach the unreachable.
SUE E. FABIAN, J.D., M.Ed.
Elder Law Attorney
Certified in Gerontology
Video Worth Watching
Aging Matters produced an episode on end of life (EOL) discussions that aired on Nashville Public Television (NPT) in September of 2013 (view at: http://video.wnpt.org/video/2365079734/). Professionals involved in this segment made a strong case for needed cultural and systemic changes in how we deal with death and dying. This is especially so given the Baby Boomer Tsunami now edging its way into the "Golden Years." Vital questions posed include:
* Does a patient want life-saving measures if only prolonging life by perhaps two weeks?
* How about longer, if it were accompanied by a high level of discomfort or pain?
The EOL discussion taboo can be unsettling but necessary. "Life," however it may appear for the dying loved-one, inevitably is accompanied by this haunting questions. Their answers, or non-answers for that matter, will impact all concerned and will resonate for those surrounding the loved-one the rest of their lives. Detailed and frank discussion will best siphon off the otherwise escalating pressure of avoiding the Grim Reaper's approach, as no one gets out of this without leaving their bodies behind.
On the micro level, Medical Powers of Attorney should be completed. On the macro level, hospitals would be wise to integrate palliative care and hospice units as alternatives to traditional curative care medical treatment as it becomes more futile. Lawyers need to step up in community education programs to help individuals complete at least template forms. Medical schools need to spend more time on how to approach EOL issues and open discussion about desired medical treatment. Legislators need to provide Medicare funding to cover EOL doctor-patient discussions ("death panel" fear-mongering aside. It's either you or the insurer that will decide how much care is enough. Who would you prefer?).
Sadly, most don't broach the issue until capacity has faded, or all concerned are in the throes of a crisis. I do provide free workshops on completing a Medical Power of Attorney. I follow that up with workshops on HOW to be a patient advocate--a role for which there is no training despite being thrust in the role of ultimate decider when lives are on the line. Watch this BLOG for dates/times.
The next workshop on how to be a patient advocate will occur Monday November 17, 2014 at 10a.m. at the Royal Oak Senior Center on Marias off of 13 Mile Road between Crooks Road and Main Street.
SUE E. FABIAN, J.D., M.Ed.
Elder Law Attorney
Certified in Gerontology
Behind the wheel...should my loved one be there? She changes the subject when I begin to voice my concerns. Dad refuses to consider anything's wrong, yet he's hit his third parked car.
First, check out Great Lakes Great Years: safety from shore to shore, published in Mary 2014 through the State of Michigan and is available at: www.michigan.gov/mdot. Included is a check-the-box self-assessment: I get lost while driving; "My friends or family members say they are worried about my driving; Other drivers often honk at me; Left-hand turns make me nervous..." Another great self-assessment tool is available at the Automobile Association of America (AAA) as a computer CD. I took the test and while initially doubtful that any computer-driven test could effectively inform me, I walked away surprised. If you are a AAA member, the cost is $3. If not: $5. Go to your local AAA branch.
Getting your older adult to review this might be a trick. But someone, somewhere along the way has to raise the issue if hazardous driving is concerning you. Perhaps you can talk with his/her doctor and have the doctor issue reading this booklet as a "prescription" with an office follow-up for further discussion.
The booklet continues with sections on: "Safety Tips for Drivers," Keeping Safe While Driving; The impact of Aging on Driving," Retirement from Driving," and "Michigan Area Agencies on Aging."
What Could A Stranger Possibly Know About My Loved One That I Don't!?
When my mother first had her stroke (1990), I was neither an Elder Law Attorney nor Geriatric Care Manager. What good would calling either possibly do besides costing a lot of money? Yet, I called. There was so much I didn't know about the medical maze, Medicare, Medicaid, and careplanning. This professional help spared me from countless hours of stumbling through this path, filled with steep cliffs if I got it wrong. To illustrate how much I didn't know, I'm including in today's BLOG an entry written by my intern, Justin Doud, and MSW candidate at Wayne State University, interested in the issues of aging. He's beginning to learn how much there is to know about caring for our elders...
Hello BLOG readers, I'm Justin Doud, a current Master's in Social Work student at Wayne State University. Just last week I’ve started interning under Sue Fabian/ElderWise Advisor and the amount of new things I have learned has been impressive to say the least. I consider myself relatively informed in gerontology and do well academically, but I’ve been surprised this last week or so at some of the aspects of aging I had never considered.
Like most people, I was aware of the caregiver’s struggle, yet reading of the first hand perspective proffered in Sue’s book Birthing Death, brought this struggle into a whole different light. Arguments among family members, self-care issues, physical and emotional caregiver exhaustion, and setting one’s limits only scratches the iceberg. Sue’s mother nearly died almost twice due to communication errors of hospice staff (Sue could take her mother dying, but not due to mistakes--especially those mistakes that led to patient suffering). Sue’s shared experience highlights the struggles of having to not only deal with the physical and emotional tolls of caregiving, but at times having to practically play the role of the doctor in advocating for a loved one. Further, the common person has no in-depth patient advocacy or gerontological experience and thus does not understand how to evaluate the differences in hospices, life-threatening medication side effects, or the mechanics of Medicare coverage. Doctors, nurses, and healthcare staff are oftimes spread too thin to serve the masses so individualized care can suffer, and at times it can cost the life of someone. How do you know what a hospice’s policy is in monitoring vitals? How do you know which nursing or assisted living center is better? How does one find out about the multitude of medications or their combined medicinal side effects, such as dehydration, which can be particularly dangerous to the elderly? The list can go on, but the point is that many people do not foresee many caregiving difficulties until they are thrust into this role. Patient advocacy is not something taught in school or for which there is an abundance of literature. The lack of common knowledge is a particularly frightening thing as baby boomers hit retirement and their caregiving will be a growing responsibility for Gen X’ers.
The importance of Medical Power of Attorney and estate planning has also really struck me. Recently I assisted in a case with a client who had no close family members and unexpectedly died before completing his estate planning. He had vocalized an expressed desire to leave to his two friends all of his possessions. But he died only one week after contacting a lawyer who never had a chance to complete the work. Unfortunately, Michigan intestacy law favors family members to whom he had no ties. Although the case is far from over and has more complications than I might suggest, the experience left me realizing the importance of having one’s estate distribution wishes documented. A Medical Power of Attorney not only allows you to have somebody you desire advocating for you when you cannot, but also guides you on when and when not to use life saving measures as directed by the patient’s wishes. It might also reflect the patient’s desire of when to use more palliative (comfort orientated) care or curative (intensive treatment) care. The resulting satisfaction and peace of mind is not only for oneself, but also for the family members who can rest easier knowing they’re fulfilling or have fulfilled your wishes.
Law is not necessarily a focal point in Social Work, but I realize now how asinine it would be for social workers to not be well educated on these legal fundamentals. To assist not only older adults, but all types of populations, these legal issues will inevitably surface and social workers owe it to their clients to become more knowledgeable on these basics. I might only be 23 years old, but the last week has opened my mind on how to better prepare as a social worker and as an adult. You can be rest assured that I’ve been pestering my parents about their lack of wills and Medical and Financial Powers of Attorney. That I’m doing these things on my own much sooner than the majority of my peers attests to the impact of this learning. I would urge ages 18 or older to swiftly handle these legal affairs. I look forward to absorbing and sharing with others these experiences and issues of gerontology and elder law in the future.
After the Flood
Many of us experienced the Great Flood of 2014, explaining my BLOG absence since 8-11-2014. The endless details needing attention after the health hazard has been cleaned up and untold armfuls of stuff has been carried out to the curb... And that's just the beginning! There's repainting. Cutting off wall paneling. More shuffling of "musical piles" of stuff that occupied one piece of furniture or bookshelf are moved to sanitize the item. Organizing the disarray is yet another tedious and time-intensive task. There are moments to take a breath as one benchmark after another is met along the way.
The laundry area was the first area I hit. It's the functional equivalent of the "plug in the sink." Without it's access, there is no good rhythm that can be re-created in one's abode. Once my washer, dryer and hot water heater were "back online," some semblance of order began to turn the tide into developing further order and re-establish a sense of normal.
Of course, much work remains after dealing with the initial trauma of sewage water infiltration, like re-paneling and deciding how to cover the once carpeted basement floor. It will take a lot more time, a lot more effort, and a lot more money. But the crisis is over. Now the re-build begins.
Only learning to live with my inner discomfort of things not being all "back to normal" remains. I want everything back in it's place!...NOW!!! I want my life to be what it used to be and not have to deal with all this chaos. My cats are discombobulated at having half of the house cut off from them. They are now using my upstairs closet as a litter box though I have one perfectly accessible to them! One cat got downstairs before the full clean-up occurred and then didn't eat for five days. A vet visit and $125 later, Jazzy didn't have any infection, but whatever yuck she got into down there certainly upset her digestive system. I then had to get her an appetite stimulant to re-start this normal living urge.
Learning to live with chaos and its domino effect into other aspects of my life has been challenging. But the 22 years of caregiving for my mom certainly paid dividends. Taking it one day at a time, putting first things first, doing what I can and letting the rest go...at least for now, are all lessons I practiced during this caregiving saga. Not that ever after all that time I've mastered it all...NOT! I still struggle with wanting that pretty bow on the chaotic package NOW. But I certainly have more tolerance for chaos than I ever used to have.
Isn't The Flood just like a caregiving crisis? There's the immediate trauma. Assessing what must be dealt with now. Deciding what can be deferred. Re-organizing a life turned upside down. Endless tedium in attending to critical minutia (drying off medical records by separating one sewage-water-logged page at a time is like wading through endless medical claims). Sanity-saving tools are the same...one day at a time, doing what I can and letting the rest go.
Finally, perspective is imperative. My first thought upon seeing the flood waters rise was, "OH SHIT!" My second? Thinking about the Yazidis in Iraq. They fled to the mountain top with nothing but their loved ones and the clothes on their backs to escape beheading by ISIS. The young and the old struggled to walk this unforgiving terrain. Some no doubt perished under it's rigor. I thought, "They would love to have my problem." By no means does this discount what I and thousands of others are experiencing, but perspective is everything. Yes, this flood clean up is hard. Yes, caregiving is grueling. Yet perspective on it all keeps me putting one foot in front of the other.
Choosing A Good Hospice Agency
In Part 1 (of 2) I shared vital background information to give you a fundamental understanding of financial incentives under which many hospices operate--incentives that drive some hospices to sacrifice care for dollars. Part 2 arms you with specific questions to ask as you survey different hospices that will help you differentiate a better agency from the rest. Do not simply accept the first hospice agency name given to you!
KNOW THAT NOT ALL HOSPICES ARE ALIKE!!!
Hospice Survey Questionnaire--Long Form
1. What does your hospice define as “crisis care.”
This gets at how they determine what constitutes a crisis. Know that actively dying is NOT a crisis. However,uncontrollable pain, breathing difficulties, intense agitation, vomiting, intense agitation are examples of crises.
2. If a crisis occurs, do you have a maximum number of hours the nurse can stay? Does the answer vary as a function of the setting?
The right answer is 24 hrs if necessary. Anything less is contrary to Federal Regulations. Also, if the patient is in a nursing home where 24/7 nursing care occurs, does this change their answer? It shouldn’t if the need requires a HOSPICE nurse. Hospices may thus not refuse such care, but neither promote knowledge of it. Know that hospices can staff continuous care with LPNs and aides after an RN has been present for 8 hours.
3. What happens if a crisis occurs where continuous care is needed and you don’t have an RN you can dedicate to a single case?
This builds from the prior answer. Know that continuous care needs stretch staffing as one becomes pulled for one case. Other nurses have to be able to cover the rest of the caseload. Smaller hospices may thus be forced to temporarily hire other RNs. Then the issue of training becomes suspect (Q 7‐8 below). Know that hospices must have special permission to use contracted RNs for core services.
4. What percent of your hospice patients typically receive continuous care for crisis intervention?
If the answer is <10%, this could indicate skimping on care to reduce costs.
5. What is the typical wait time between a call for help and on‐site appearance?
I waited 2 hrs. The above stories indicate days. Make the representative give an average time. Tell h/er that this answer is critical in whether you select h/er hospice. The wait should be no more than one hour.
6. How many patients do you have?
This gives you an indication of the size of the hospice (60‐100 is considered “large”).
7. What is the nurse‐to‐patient ratio?
Ask them first what they consider a good nurse‐to‐patient ratio.. I’ve been told that 12‐15 patients/RN is a good ratio.
8. How trained are your nurses in end‐of‐life care?
Federal inspectors have noted a lack of experienced personnel, especially trained hospice RNs. CHAP requires minimal “competency checks” (examples?) and monthly in‐service training.
9. What in‐house training do you require of nurses, both in frequency and content?
10. What is your average patient stay in hospice? Keep in mind the 2011 national average of 69 days for non‐profits, and 102 days for for‐profits.
11. What services do you offer that other hospices typically do not?
I know of one hospice (Seasons Hospice in Madison Heights) that offers music therapy Music can be powerful in facilitating peace at the end of life. In one person’s instance, a harpist “could adjust a patient’s heart rate and comfort levels based on the music she played.” Other alternative therapies can include massage, Reiki, pet, aroma and art.
12. What do you define as “caregiver breakdown” meriting respite care in inpatient facility?
The Medicare Benefit Policy Manual lists examples that justify inpatient care when home support has “broken down,”: when medication adjustment to the patient is needed, when, other stabilizing treatment such as psychosocial monitoring is needed (presumably for a family caregiver vs the patient), or “when family is unwilling to permit needed care in the home.” If granted, the benefit is for no more than 5 consecutive days. Note: “the aggregate number of inpatient days for respite cannot > 20% of aggregate number of days of hospice care provided to all Medicare beneficiaries in that hospice.” (2014
13. Do you have an inpatient facility or access to a hospital if crisis care is needed?
Some hospices have no inpatient facility access as some hospitals won’t make that contract as they can make more $$$ w/other patients. (Hospice pays $700/day for inpatient hospice). (Also, it’s a big money‐loser for hospices).
14. Do you have “vigil volunteers?”
It may be especially helpful when the last hours seem to be upon the patient, that volunteers are present to vigil and relieve family members so that they catch their breath at this intense time. Know, however, that this service is hard to staff.
15. What happens if a durable medical equipment (DME) company with which you contract delivers malfunctioning equipment and that causes a patient care emergency? For instance, a malfunctioning concentrator (an oxygen delivery apparatus) causing respiratory distress needs immediate attention. Will you send out an RN to help, or simply refer me back to the DME company, if they are open and if they can immediately send someone out, then wish me the best?
The issue is obvious! In another example, a DME company sent out a hospital bed. When the man arrived, he advised me that I needed to get my mom out of her bed, put her in a chair then put her in the hospital bed once assembled. Right, she was semi‐comatose! He couldn’t help due to liability issues. I then had to call my mother’s pastor and ask him to rustle up a bunch of guys that could help transfer her from her bed to the hospital bed. Ask Qs re potential problems ahead of time!!!, and be thinking of “Plan B” if a breakdown occurs. Also, good DME companies are available 24/7.
16. If I have a loved one in a facility, and you are not contracted with that facility, would you be willing to initiate a contract when that facility?
Facilities may limit your choice to hospice agencies according to exclusive contractual arrangements. Nevertheless, ask the hospice and the facility administrative director if another contractual agreement would be accepted. If a hospice doctor is stingy on giving pain meds, call your loved‐one’s primary care physician for another opinion and have h/er call the hospice physician. Or see if another doctor in the same hospice is available. As a final resort, change hospices (admittedly, this takes a logistical and emotional toll when the caregiver may least be able to advocate on this point).
17. What is your policy with pain medication?
Physicians are monitored in their administration of pain medications, even hospice physicians. This can lead to being stingy on pain medication administration, thus not adequately addressing the pain level of the patient. For the dying person, its most important to h/er to not suffer in pain! Who cares if the patient becomes addicted to morphine at this point!
18. How timely is the delivery of DME and other patient supplies?
You don’t want to run short on pain meds, incontinence products, skin care cream, wound care products, oxygen supplies. A good response time would be less than 2 hours.
19. How well does the hospice RN coordinate w/facility RNs? Is this coordination a one‐time interaction or on‐going, according to patient medical status?
In my case, the hospice RN merely acquired the RX list from the facility nurse. There was no CARE PLANNING or ON‐G0ING interaction. This led to an abysmal situation where despite the hospice RN knowing my mother had not eaten in two days (thus driving down blood sugar) and that she was diabetic, the facility continued to administer diabetes medication (driving down her blood sugar to near‐fatal levels). Were it not for my (non‐medical) intervention, she would have died that night due to a stupid lack of care coordination. I could take her dying, but not due to incompetence! The hospice RN is actually
required by Medicare to read the facility chart and attend its case conferences on the patient. In fact, demand an initial coordinating case conference so family, facility and hospice agency are all on the same page, and you know who is supposed to be doing what. Do not be shy to demand subsequent coordinating conferences with facility and hospice staff.
20. Don’t forget to do an internet search of complaints on your final hospice selection to look for consumer comments and Medicare inspection information!
Hospice Survey Questionnaire--Short Form
1. What does your hospice define as “crisis care.”
2. If a crisis occurs (e.g. breathing difficulties, uncontrollable pain, intense agitation, vomiting), do you
have a maximum number of hours the nurse can stay?
3. What percent of your hospice patients typically receive continuous care for crisis intervention?
4. What is the typical wait time between a call for help and on‐site appearance?
5. How many patients do you have?
6. What is the nurse‐to‐patient ratio?
7. How trained are your nurses in end‐of‐life care?
8. What in‐house training do you require of nurses?
9. What is your average patient stay in hospice?
10. What services do you offer that other hospices typically do not?
11. What do you define as “caregiver breakdown” meriting respite care in inpatient facility?
12. Do you have an inpatient facility or access to a hospital if crisis care is needed?
13. Do you have “vigil volunteers?”
14. What happens if a durable medical equipment company with which you contract delivers
malfunctioning equipment and that causes a patient care emergency? For instance, a malfunctioning
concentrator (an oxygen delivery apparatus) causing respiratory distress needs immediate attention.
Will you send out an RN to help, or simply refer me back to the DME company, if they are open and if
they can immediately send someone out, then wish me the best?
15. If I have a loved one in a facility, and you are not contracted with that facility, would you be willing
to initiate a contract when that facility?
16. What is your policy with pain medication?
17. How timely is the delivery of DME and other patient supplies?
18. How well does the hospice RN coordinate w/facility RNs? Is this coordination a one‐time interaction
or on‐going, according to patient medical status?
20. Don’t forget to do an internet search of complaints on your final hospice selection
Choosing A Good Hospice Agency
In Part 1 (of 2) I have developed vital background information to give you a fundamental understanding of financial incentives under which many hospices operate. Such incentives drive some hospices to sacrifice care for dollars. Other hospices manage to balance patient care and profit. Part 2 provides 20 detailed questions to ask each hospice agency you are considering.
IT IS IMPERATIVE TO APPRECIATE THAT NOT ALL HOSPICES ARE ALIKE!!!This research includes information and data from three main sources: 1. 2014 Medicare Handbook, a Wolters Kluwer Law & Business publication. 2. Dec 2013 Washington Post three-part series on hospice care. 3. Personal experience of Elder Law Attorney & Geriatric Care Manager Sue E. Fabian There are certain basic principles to know when effectively evaluating various hospice agencies with the aim of selecting one to engage in service for your loved one:Eligibility Criteria:
Although they all must follow federal/Medicare eligibility criteria, each hospice may interpret them differently--some are more liberal, some are very narrow.Profit v Non-Profit:
As a general proposition, in my opinion and the opinion of many informed, non-profits tend to be more people-prioritized vs profit. This is NOT to say that all non-profits are good and “nons” are bad. However, after Medicare added the hospice benefit in 1983, for-profits mushroomed. I’ve had experience with both and have found some for-profits to be very good. I have also found great lack in non-profits.Industry Incentives:
Some for-profits subordinate ethics by exploiting Medicare’s hospice payment structure. Per a revealing December 26, 2013 Washing Post series on hospice care: Medicare pays hospice $150 a day per patient for routine care, regardless of whether the company sends a nurse or any other worker out on that day. That means healthier patients, who generally need less help and live longer, yield more profits…In 2011, nearly 60% of Medicare’s hospice expenditure of $13.8 billion went toward patients who stay on hospice care longer than 6 months…Some of those patients simply outlived a legitimate prognosis of 6 months. But much of the data suggests that the trend toward longer stays is a response to the financial incentive. Consider the difference between the non-profit and the for-profit hospices: While the average non-profit serves a patient for 69 days, the average for-profit hospice serves a patient for and average of 102 days…Four of the 10 largest hospice companies in the US, including AseraCare, have been sued by whistleblowers alleging that patients were receiving care they didn’t need. The [US] Justice Department has joined several of these lawsuits, including the one against AseraCare and Vitas, the nation’s largest hospice provider.Hospice “outreach specialists” and “community education representatives” seek out patients in a variety of ways: They solicit doctors and hospitals who might regularly deal with the terminally ill; they make connections at nursing homes, assisted living developments…At AseraCare, officials gave advise to their recruiters on how to close a deal with families who are “not ready yet” for hospice…It instructed recruiters to “focus families” by stressing the urgency of a decision, and saying things like, “We only have 10 minutes left.”…At Odyssey Healthcare, one of the nation’s largest hospice companies, representatives earned bonuses if they met their goals for new patients...The case led to a $25 million settlement…At Viats, a division of Chemed…the corporate culture encouraged staff to admit as many patients as possible, regardless of whether they were eligible for hospice care…[T]he company paid bonuses based on the number of patients enrolled…the company philosophy was “sign everybody up” and that medical staffers felt pressured to admit patients regardless of whether they were appropriate…”How do you solicit patients?” a marketer is quoted as saying. “You see somebody sitting on the front porch in a wheelchair and you hit the brakes.”…Big Business has moved in…In 2000, 70% of hospices were run by non-profit organizations or government agencies. Today, nearly 60% are for-profit companies… The profit margins as measured by MedPAC, the Medicare watchdog, climbed to 8.7% in 2011. The per-patient operating profit has risen from $353 to $1,975 in 2012 (Calif data)…The returns have attracted some prominent financial firms, whose analysts have run the numbers and decided to invest…The moral of the story: a consumer hospice survey needs to determine, to the extent possible, how driven the company is to prioritize profits over people. In a blog on the Washington Post series, one person noted: “Many not-for-profits around the country are in a fight for its life to stay afloat…services are being cut…Medicare reimbursements are dropping and the rise of Wal-martesque for-profit hospices are on the rise. Multi-state corporations like VITAS are spreading like a cancer across the country and choking out the compassionate care that was once offered by local not-for-profits…For-profits [have] board members who are not even local and whose goal it is to increase stockholders’ dividends.” Quality of Service:
This is my most important criteria. This is ascertained by first creating a nose for their degree of profit-prioritization (if a for-profit), then exploring key administrator longevity, years in service, Google complaint searches, the depth and scope of service and other key factoids as developed in the Hospice Survey Questionnaire below. Depth of Service:
On-call reliability is key! In the heat of the moment, how available is staff? Even worse, how does the profit incentive affect heat-of-the-moment staffing? From the same Washington Post series:The 2004 annual report of VistaCare…noted that its fortunes depended on its ability to manage costs and ‘maintain a patient base with a sufficiently long length of stay.’ The company also warned that ‘cost pressures resulting from shorter patient length of stay…could negatively impact our profitability.’…If they come in very sick and die right away, it’s difficult to run a business that way.”…A woman dying of liver cancer, battling nausea and breathing difficulties, waited weeks for someone to drain fluid from her swelling abdomen and died waiting…Another cancer patient had a feeding tube that oozed pus where it pierced his skin and did not actually reach his stomach. He had received no fluids from it for 5 days.
Why wasn’t hospice’s touted “we’ll be there at any time” mantra effectuated? Back to profit. Patients needed just “status-quo” care reap the highest profits as h/er care can be pretty much scheduled (routine = no medical surprises, hence no extra staff/time). Once “critical” care required “continuous bedside nursing care “ or “inpatient care,” these needier patients “can be a financial and logistical drain for small and mid-size agencies.” One of the most difficult challenges for any hospice is how to handle a patient whose symptoms—such as pain, breathing difficulties, seizures, vomiting or anxiety—have run out of control. To handle such situations, hospices are required by Medicare to be able to provide either continuous nursing care at home or inpatient treatment at a medical facility such as a hospice, nursing home or hospital. Yet about 18% of US hospices did not provide a single day of either type of crisis care to any of their patients, according to a Post analysis of the 2012 billing records for 2,560 hospices in the US. About 10% of hospice patients get some continuous nursing care, according to a 2011 report from the National Center for Health Statistics. And about 25% of hospice patients receive inpatient care at a medical facility at some point during their time receiving hospice services, Medicare statistics show. ‘If a hospice of any decent size provides zero days of general inpatient care, I consider that suspect,” Joan Teno, a researcher and clinician at Brown University who has spent most of her career studying the quality of care at hospices…One of the largest such hospices in the country is the Heartland Hospice Services in Santa Rosa, CA, a facility owned by HCR ManorCare, a company that was turned private in 2007 by the Carlyle Group, a private equity firm. Its hospice in Santa Rosa billed Medicare in 2012 for more than 50,000 days of routine hospice care, not one patient received continuous care or general inpatient care…Patients in crisis are entitled to continuous care FOR UP TO 24 hr/day, “to achieve palliation or management of acute medical symptoms.” (2014 Medicare Handbook; 42 CFR Sec 418.204(a) / Medicare Benefit Provider Manual, Ch 9 Sec 40.2.1).Coordination of care, another “depth” issue can vary as a function of the patient venue (e.g. home, hospital, nursing home, assisted living). With many hospices, there’s less coordination of care with the patient venue in settings other than nursing homes (where 24/7 on-site nursing occurs). For instance, coordination of care lapses resulting in death due to simple lack of good communication can easily occur in assisted living settings, where there is a M-F/9-5 nurse site manager, the rest being handled by lack-of-independent-judgment aides resorting to on-call supervision. This leaves open a critical gap in service should the rote-function aid fail to detect a medical urgency. Survey Questions must therefore be developed to probe these depth-of-service issues. Scope of Service:
Some hospices have distinguishing services, such as music therapy. Tapping into a dying person’s most heart-held music can evoke enormous pleasure, pleasurable memories and comfort of the soul.Discharge Criteria:
Once a patient is on hospice, 90 days of service becomes available. Re-certification processing then occurs that if favorable, leads to another 90 day period. If re-certification continues, unlimited 60-day service periods continue, subject to end-of-period recertification. However, team decision-making precedes the re-certification decision date. In my own case, being aware of these critical hospice re-cert times, I began inquiring ahead of time. Pre-emptiveness proved paramount. Indeed, I learned weeks ahead of the “go, no-go” date, the team had already decided to discharge my mother from hospice service. I had to strongly protest and assert my evidence to persuade them to alter course. I was deeply aware of intangibles their clinically-oriented minds and data-driven decision-making couldn’t grasp. I was right, and I knew it. I knew my mother was so fragile that at this point, any little thing could trigger a cascading, ending spiral. It took me talking to every team member—the nurse, the chaplain, the social worker and the doctor before they thankfully changed their collective mind. One month later my mom was dead. Also, hospice caps might prompt a medically unwarranted discharge while hospice might give you a bogus but ostensibly legitimate reason. Per the 2014 Medicare Handbook, “[B]e wary of hospice discharges in cases when the beneficiary’s health status has not changed and the only apparent reason for the discharge is that the beneficiary has lived “too long.” …Medicare regulations have included a cap limiting the average annual payment per patient a hospice can receive. The average annual payment cap is calculated from Nov 1 though October 31.” If the cap is exceeded, hospices “are asked to pay significant sums of money back to Medicare. As a result, to avoid this sanction in the future, hospices may inappropriately discharge patients who live >6 months.” If this occurs, ask the patient’s primary care physician for an independent opinion. To re-certify, h/er opinion can carry the day, i.e. the re-certification opinion does NOT have to come from the hospice physician. However, if one’s PC favors re-certification, expect push back from a reluctant hospice. With this background in mind, I’ve developed these more probing hospice entity questions…See the upcoming Part 2.
SUE E. FABIAN, J.D., M.Ed.
Elder Law Attorney
Certified in Gerontology