Wednesday, March 19, 2014
I spent most of our recent spring break in Arizona with my parents and sister (and trying to thaw my frozen bones). I had time to visit friends, some I haven't seen in decades, and often I was tempted to give a rueful chuckle. We're all in the same age range -- and several of us are searching for ways to help aging parents. With friends who have a parent with dementia, as soon as they find out that much of my work now focuses on "elder law," I would get what I've come to think of as "the question."
What's the question? "Is it inevitable that I too will develop dementia?" Of course, I'm a law professor, not a doctor. My friends are asking the wrong person.
But, then I noticed that several of my friends were reading the same book. The book is "100 Simple Things You Can Do to Prevent Alzheimer's and Age-Related Memory Loss," by Jean Carper, a well-respected medical journalist. One friend loaned me a copy. It was first published in 2010. I asked friends what they liked about the book, and more than one mentioned the "single idea" format for chapters, short enough to keep the reader on task, while sufficiently detailed to convince the reader why that "tip" just might make sense.
Some of the 100 "things" are, I hope, mostly an affirmation of common sense, such as Chapter 17's "Count Calories" and Chapter 20's "Control Bad Cholesterol." Occasionally a chapter strikes me as a bit trendy, such as the admonition in Chapter 22 to "Go Crazy For Cinnamon." But quite a few topics and explanations were either surprising, intriguing, or both, including Chapter 3's recommendation to "Check Out Your Ankle." The author explains how low blood flow in your foot, measurable by an ankle-brachial index (ABI) test, can point to looming troubles for the brain.
Happy reading and good luck adapting the tips to your life. Remember, with 100 recommendations to read, evaluate, and, as appropriate, embrace, it doesn't hurt to start "young."
Monday, March 17, 2014
The Centre for Ageing Research and Development in Ireland (CARDI) is a great resource for comparative research, capturing a wide range of articles and projects in Europe, as well as the latest research grants in the north and south of Ireland.
In one of the recent reports linked by CARDI, "A National Survey of Memory Clinics in the Republic of Ireland," researchers are critical of the lack of clear standards for diagnosis, treatment and collection of data on dementia, and point to potential weaknesses observed in a national system of Memory Clinics (MCs) in the Republic of Ireland (ROI), noting the potential for such problems to exist on a broader basis:
"Although this is an Irish-based study, our findings raise several important questions pertinent to many countries around the world currently developing and expanding diagnostic and postdiagnostic services to address the challenge of dementia. First, what type of specialist services do MCs offer and what are their core aims and objectives? Are MCs concerned with offering a more correct diagnosis than what might otherwise be available through generalist services? Are they committed to providing earlier diagnoses and interventions in more unusual cases (including memory problems that are reversible) and if this is the case, is a waiting time of up to four months acceptable? In the ROI, GPs [general practitioners] are permitted to initiate cholinesterase inhibitors for patients diagnosed with dementia, but would it be preferable if the prescription of such drugs was confined to MCs or other specialists involved in dementia diagnosis? What role do MCs play with respect to the education and training of primary care and other allied health professionals? Should this role be confined to only the larger longer established clinics that become Centers of Excellence and review only few and very rare cases?"
Do we have any systemic approach to diagnosis, treatment and data collection on dementia in the United States?
Wednesday, March 5, 2014
The American Geriatrics Society and the American Board of Internal Medicine Foundation have joined in a venture called "Choosing Wisely," and recently issued "Five Things Physicians and Patients Should Question."
The items are intended to stimulate more thoughtful decision making, especially in dementia care, and address diet, restraints, and use of screening tests. Two items that hit home include:
- Don't prescribe cholinesterase inhibitors for dementia without periodic assessment for perceived cognitive benefits and adverse gastrointestinal effects.
- Don't prescribe any medication without conducting a drug regimen review.
This "Five Things" list was actually the second set of "Choosing Wisely" recommendations. Here's a link to the important first list, which includes the concern about off-label prescriptions of antipsychotic medications to treat symptoms in dementia, a topic that has also been the subject of major whistleblower cases and settlements involving the pharmaceutical industry.
Thursday, February 27, 2014
Hat tip to Penn State Law Student Kevin Schock for sending this news!
Actor Seth Rogen, organizer of Hilarity for Charity, uses humor to call attention to the need for better funding to fight Alzheimer's, and on Wednesday brought his humor to the U.S. Senate. Here he is in testimony before the Senate Subcommittee on Labor, Health and Human Services, Education, and Related Agencies, describing the struggle of his own wife's family with early onset dementia.
Wednesday, February 26, 2014
AARP recently launched a new multi-state caregiving advocacy campaign, with nearly every AARP State Office involved. Working with governors, state legislators, other policymakers and community partners, we’re determined to advance policy options that will help family caregivers. Two significant components of the campaign are:
- The Caregiver Advise, Record, Enable (CARE) Act Caregiver Advise, Record, Enable (CARE) Act, and
- The State Plan in Support of Family Caregivers, also referred to as the Caregiver Resolution.
The Caregiver Advise, Record, Enable (CARE) Act.
- In Oklahoma SB 1536 – the Oklahoma version of the CARE Act – just passed the Senate and will be heard in the House soon. Meanwhile, Governor Mary Fallin declared this month as “February Caregiver Month” to honor the state’s 600,000 family caregivers.
- AARP Hawaii, is urging the Senate Judiciary Committee to pass Senate Bill 2264, the Hawaii equivalent of the CARE Act. AARP members in Hawaii are now contacting members of the committee asking them to support the 169,000 family caregivers in the state by passing Senate Bill 2264.
By passing the CARE Act these states will ensure that:
The name of the family caregiver is recorded when a loved one is admitted into a hospital or rehabilitation facility.
The family caregiver is notified if the loved one is to be discharged to another facility or back home.
The facility must provide an explanation and live instruction of the medical tasks – such as medication management, injections, wound care, and transfers – that the family caregiver will perform at home.
Tuesday, February 25, 2014
One of my frequent travel routes is to drive between Carlisle and Baltimore, in order to take direct flights from BWI to Phoenix, where my parents live. Usually these drives are in the middle of the night, as I try to avoid traffic by scheduling very early or late flights. One positive aspect of this travel is the time to discover interesting radio programs; there is something about listening to radio in the dark that allows one to hear more clearly. Last week, I lingered in the car after reaching the long-term airport parking, to listen to the end of an especially effective interview.
On Point with Tom Ashbrook, was hosting Kimberly Williams-Paisley who spoke movingly about her family as they coped with her mother's early onset of a form of dementia, diagnosed at age 61. For those of you who enjoy either movies or music, you might recognize Kimberly as an actress from Father of the Bride (she was the daughter driving Steve Martin to wit's end) and Nashville, or as the wife of country music star Brad Paisley. Also featured on the program was a clinical social worker, Darby Morhardt, who is an associate professor at the Cognitive Neurology and Alzheimer’s Disease Center at Northwestern University’s Feinberg School of Medicine.
The program was very thoughtful and emotional, but for me the most compelling words came from Kimberly's father, Gurney Williams.
This is a man deeply in love with his wife and also deeply affected by her condition. At first he tried to hide her diagnosis, but over time, this became more and more difficult. Mr. Williams describes how he finally came to terms with the need for help -- and the need for more than family help -- when his children staged a bit of an intervention. They asked him to recognize that his wife's condition, which in her case included confusion, mood swings, anger and -- at times -- violence, was more than they could cope with in the home. They were worried about their mother, but even more devastated by "losing" their father as he struggled to care for her. With the family's help, he finally made the difficult decision to place his wife in a formal care setting.
And it was during his description of the journey, that I heard the words I've also heard many times from friends, family, students and clients. "I promised my loved one I would never put her in one of those places." I have come to recognize this promise as completely well-intentioned, but also potentially dangerous for all involved.
Listening to Mr. Williams and Kimberly, you could tell formal care was the right decision and they were able to find the right kind of care facility for their loved one. And it was a decision that allowed all of them to find a new way to express their love and devotion to her, while also providing her with a supportive, safe environment. Kimberly talks about how she stopped talking about her mother in the past tense, rediscovered her and how they created a new, valuable relationship. Their story has a happy evolution, which, of course, is different than a happy ending.
One of the reasons I was so affected by listening to Mr. William's words, was that I was on my way to the airport to visit my father -- to see him for the first time -- after his transfer to a dementia-care community. All of my fears and hopes were bound up in my listening. On arriving in the airport I went directly to a shop and bought a copy of the March issue of Redbook Magazine, which carried the story by Kimberly Williams-Paisley that led to the invitation for her and her father to be guests on the On Point program. I read and re-read "How I Faced My Mother's Dementia" on the plane -- and shared her words with my mother when I arrived.
I suspect I might write more about my own evolution with my father. Right now it is easier for me to recommend the article, and to say the podcast of the On Point show is even better than the article.
Thursday, February 6, 2014
Via NBC News:
Every Saturday at Casa Maravilla, a housing development for seniors in Chicago, dozens of older Latinos gather to dance and, they hope, help preserve their memory. At twice-weekly practices, they step in sync in promenade-like moves to danzón, the slow and elegant musical genre that’s popular in Mexico. Or, they swish their hips and twist through each others’ arms to more energetic salsa. The dancers are part of the Latino Alzheimer’s & Memory Disorders Alliance, or LAMDA, which started “Bailando por la Salud” (Dancing for Health) to inspire Latinos who are uncomfortable with other forms of exercise to get fit and healthier -- which in turn may help stave off Alzheimer’s and other memory loss conditions.
Read more at NBC News.
Wednesday, February 5, 2014
An important new book, Sexuality and Dementia: Compassionate & Practical Strategies for Dealing with Unexpected or Inappropriate Behaviors, published in December 2013, offers a physician's candid assessment of a topic often discussed, if at all, only in hushed tones.
Reading the first chapter called to mind a colleague in aging studies, a nurse, who related to me how a tearful woman once asked her how to hire a prostitute, as her husband was in the mid-stages of dementia and constantly wanted sex. The wife as the home caregiver was, in a word, exhausted. This book recognizes that a wide range of sexual behaviors often accompany dementia. Sexual agression is sometimes even a sign that something has changed in the individual's cognitive functioning, only later recognized as an early step in the process of dementia.
The author, Geriatric Neuropsychiatrist Douglas Wornell, is quite critical of the medical profession's approach -- or rather a frequent failure to even discuss -- the topic. Dr. Wornell observes that "to date, patients and their partners have been virtually abandoned by an entire medical system that has provided little to help them with sexuality as it relates to dementia. Considering the numbers of people affected -- tens of thousands of people in my practice alone -- that abandonment is nothing more than shocking."
The book is written in plain terms, covering everything from the "neurobiology of sex and dementia" to the potential for medication to stimulate -- or alleviate -- the condition, while also discussing the impact of the behaviors in the home and in more formal care settings.
Tuesday, January 21, 2014
Recently, a Pennsylvania friend was describing her aging father's situation in one of the sunshine states. When her father, a widower, began to show signs of diminishing capacity, the adult children discussed options, including moving Dad closer to one of them. But, he liked his retirement spot in the sunshine, had friends, and, in fact, there were more care options where he was living.
Eventually, my friend hired a local geriatric care manager in the sunshine state, with the cost shared by her and two siblings. In our most recent conversation, my friend described that decision as perhaps the best move the family made. She said that at first she had a hard time getting her father's facility to accept the fact that they should call the care manager first. But having an informed person -- an experienced advocate for her father -- in the community has often been essential, as questions arose over insurance, level of care, medications, transfers between facilities, nutrition and whether to hospitalize. My friend still makes regular trips to visit her father, but the local manager meant there were fewer emergency trips.
Geriatric care managers, sometimes called care coordinators, elder care coordinators, or professional care managers, could -- and perhaps should -- be an increasingly important part of planning. One of the questions about this emerging profession is credentials. At least two national trade groups exist, including the National Association for Professional Geriatric Care Managers (NAPGCM) and the National Academy of Certified Care Managers (NACCM).
In addition, law firms specializing in elder law frequently offer care management services, often employing non-lawyer professionals as part of the team.
Geriatric care management may be very important to "elder boomers," both as they become seniors caring for their even-more-senior-aged parents, and as future care-needing individuals themselves. Unfortunately, a big question may be cost. Medicare and Medicaid -- and most insurance -- does not cover the cost of care management. As reported by the New York Times a few years ago in "Care Coordination: Too Expensive for Medicare?," attempts to secure public funding for care managers has been stymied by studies that show care management does not necessarily reduce the costs of care.
Nonetheless, such coordination may be particularly important in a nation where family members often live far apart. In my friend's situation, she expected the need to last for a couple of years, but in fact, her father is approaching age 98, and the "healthy" relationship between the children, their father and his care coordinator has lasted for more than 10 years.
January 21, 2014 in Cognitive Impairment, Consumer Information, Dementia/Alzheimer’s, Ethical Issues, Health Care/Long Term Care, Legal Practice/Practice Management, Medicare | Permalink | Comments (0) | TrackBack (0)
Monday, January 20, 2014
I've been catching up on reading of practitioners' blogs. I quickly came across interesting discussions of potentially cutting edge decisions in recent law and aging cases. Here's a selection:
- From Tucson, Arizona, Robert Fleming's Legal Issues Newsletter reports on the background of the Arizona Court of Appeals decision on January 2, 2014 in Savittieri v. Williams, affirming the post-death annulment of a woman's marriage for lack of capacity.
- From Dearborn Michigan and Pittsburgh, Pennsylvania, John Payne's Off the Top O' My Head, comments on recent decisions within the Third Circuit that address the use of spousal annuities or trusts in Medicaid planning. For example, he discusses the January 14, 2014 ruling in the United States District Court, Western District of Pennsylvania in Zahner v. Mackereth, that makes fact-specific rulings in three consolidated cases involving annuities and which also, surprising, revisits the dormant "Granny's Lawyer Goes to Jail" provision of federal Medicaid law. Fortunately for attorneys, the court agrees with former Attorney General Janet Reno that application of the law to legal advice is unconstitutional. Nonethless, I think it is safe to say that the Pennsylvania Department of Public Welfare's attempt to push the law is an indication of the battle lines being drawn over use of annuities.
- From Fairview, Oregon, Orrin R. Onkin's Oregon Elder Law, reports on an array of elder abuse cases, including a 2013 decision by the Oregon Court of Appeals affirming an award of treble damages under the state's elder abuse statute against an ambulence company, in Herring v American Medical Response Northwest, Inc.
Friday, January 10, 2014
The earliest signs of dementia are often subtle. It can be tempting and easy to brush them off as merely the signs of fatigue or being overwhelmed. Ironically, at the other end of the spectrum, advanced dementia, it may also be easy to jump to conclusions, believing one diagnosis fits all forms of dementia. The modern assumption is probably most often Alzheimer's, while in earlier decades the label might have been simply "senility."
I often ask a medical or gerontology professional with expertise in the various forms of dementia, including Lewy-Body Disease, Frontotemporal Dementia (FTD), Parkinson's related dementia, vascular dementia, as well as Alzheimer's, to speak to my elder law classes. The lectures are fascinating (okay, also a little frightening). But often, near the near the end of a class discussion, a student will ask, "if there is no cure for dementia, does diagnosis of the source really matter?"
A family's search for answers suggests there are may be very good reasons to pursue a definitive diagnosis, even if the ultimate answer is possible only after the death of a loved one impacted by disease. The Ruhrig Family in central Pennsylvania was perplexed by the symptoms and rapid progress of confusion for the patriarch of their family. Sixty-six year old Weston Ruhrig passed away less than a year after the family first began seeing signs of confusion:
"The 6-2, 210-pounder was up by 7 a.m. daily ... seemed always on the move. In June , he conducted a charity auction for United Cerebral Palsy of Central Pennsylvania, just as he had since 1987. He seemed normal.
But his family began noticing odd behavior. Ruhrig became withdrawn. He continually locked doors, sometimes locking out his wife after she had gone to the yard or garage during daylight. Ruhrig was known for harping on people to turn off lights to save electricity. Now he switched on lights for no reason and left the room.
By September , his family had persuaded him to see his family doctor. The doctor found no medical problems but referred him to a neurologist. Ruhrig felt nothing was wrong. In November, the neurologist gave Ruhrig cognitive tests. Ruhrig named the president and recalled facts including his wife’s birth date. But he couldn’t correctly state her age or calculate it. Still, he joked during the visit."
As carefully detailed by Patriot News writer David Wenner, eventually doctors suggested the problem was Alzheimer's. But the family, contrasting their father's symptoms with those of others they knew with more traditional presentations of Alzheimer's related dementia, persisted in seeking a more precise diagnosis. An MRI was viewed as normal. Another test was a spinal tap. Unfortunately, Mr. Ruhrig died suddenly in December 2013, after a fall that led to a rapid decline.
The diagnosis occurred after his death, based on the results of the spinal fluid analysis: Creutzfeldt-Jakob Disease, a very rare variation of the family of diseases associated with "Mad Cow" and "chronic wasting" in deer, but a form that is not considered to be caused by eating or handling contaminated meat. Deterioration associated with the condition is rapid, usually leading to death within a year, and the cause of the disease is currently unknown, and there are no cures.
But the courage of the family in pursuing and talking about the diagnosis could help others, as better understanding of the various forms and causes of dementia should help the larger community of physicians, epidemiologists and other experts chart the frontiers of dementia. Heredity, life-style, diet, viruses, environmental impacts -- with the help of families, all of these factors and others might better be understood in the search for causes and solutions for the different forms of dementia.
For more, read "Hampton Township Man Dies of Mysterious Disease Sometimes Associated with Mad Cow and Chronic Wasting." Thanks to my colleague, Professor Laurel Terry, for pointing me to this interesting local article.
Tuesday, January 7, 2014
This book review is the first of two student-authored pieces I will be posting this week. We've heard from Regan before--she attended the NAELA/NALI conference in November and wrote two posts about her experiences there. Regan is a December 2013 graduate of William Mitchell. She also has a certificate in health law compliance from Hamline. Regan will be taking the Minnesota bar in February and is looking for a position in the elder law/health law field. Contact me if you have any leads for her and I will put you in touch!
Barbara Cassidy, Deliberate Accident (BookCrafters 2013) (self-published) (available from Amazon)
Review by Regan Bovee, J.D. William Mitchell College of Law, December 2013
Deliberate Accident tells the story of author Barbara Cassidy’s fight to protect her father, Robert, from physical, financial, and verbal abuse from his second wife, Diane. After Robert’s first wife (Barbara’s mother) dies, Robert quickly begins dating and enters into several relationships with women who take advantage of his generous, trusting personality. Robert eventually meets and marries Diane, a nurse at a local nursing home who, unbeknownst to Robert, has recently married a well-to-do resident. Diane makes a living from seducing male residents and other elderly men, gaining control of their finances, and selling their possessions.
The beginning of Robert’s relationship with Diane coincides with the first signs of his dementia. It is often hard for Barbara to tell if her father’s actions are “her father being her father” or if he is losing cognitive ability. By the time it is clear that Robert has dementia, Diane is so entangled in their lives that Ms. Cassidy, her father, and their family are helpless.
The focus of the book is Diane’s reprehensible treatment of Robert, but the real value is in the very accurate depiction of how Robert’s dementia progresses over the course of ten years. Ms. Cassidy frequently quotes a psychologist who tells her that Robert’s dementia is “as good as it will ever get right now . . . In fact, it will only get worse.” This statement holds true throughout the book and is sure to have a familiar ring to those who have cared for someone with dementia. Although Ms. Cassidy, a long-term care nurse herself, continues to advocate for her father as his dementia becomes increasingly worse, there is little she can do for him.
Although Ms. Cassidy describes the book as a memoir, there are several conversations and descriptions of other’s thoughts and actions of which it would be impossible for her to have knowledge. This makes the story seem a bit less credible but enhances the dramatic quality. Further, the story line is difficult to follow in some areas. Characters are referred to interchangeably by their name or relationship (i.e. Robert or Dad) and sometimes switch mid-page, which disrupts the flow. Some of the sentences are also a bit choppy. Ms. Cassidy’s goal in writing this book, however, was to share her experience dealing with her father’s dementia and his new wife who abuses him physically, emotionally, and financially. She more than succeeds in that goal.
Note: This book is self-published.
Monday, December 30, 2013
One of the most memorable pieces I've read was a New York Times essay written a few years ago by Katy Butler. Butler wrote with restrained emotion and honesty about her father's struggle with deepening Alzheimer's, fueled beyond all hope of better days by his pacemaker. She later expanded on the essay with a book published in 2013, "Knocking on Heaven's Door: The Path To a Better Way of Death," where she digs into the background of legal and medical issues about end-of-life, and details her mother's very different path.
Diane Rehm has a fascinating interview with Katy Butler, available on podcast and being re-broadcast today on many public radio stations. Near the end of the hour-long segment, one of the callers is an Elder Law attorney (I didn't catch his location -- I was blogging as I listened!). Here's a link to Diane Rehm's website for details on the interview.
Tuesday, December 17, 2013
Via the Telegraph:
Tens of thousands of pharmacists, bus drivers and bank staff are being trained to recognise the signs of dementia as part of a “front-line force” against the disease. Managers of some of the biggest firms have pledged to educate staff to recognise the effects of dementia. Boots, Lloyds bank and First Group have all committed to do as much as possible to help dementia sufferers after David Cameron promised to lead a national “fightback” against the illness. Jeremy Hunt, the Heath Secretary, said “every section of society” must “step up” to help tackle the illness, which affects 800,000 people in the country. “Britain’s biggest companies will build up a front-line force of thousands of people able to spot the signs of dementia and understand the needs of sufferers, helping people with the disease to live a normal life for longer,” Mr Hunt told The Daily Telegraph. The Prime Minister said this week that a cure for dementia could be found within 12 years as he announced funding for research into the disease would be doubled.
Wednesday, December 11, 2013
The Royal College of Physicians of Edinbrugh is hosting a symposium on "Ethics and Care for Older People Approaching End of Life: Symptoms, Choices and Dilemmas" on April 3 in Scotland. While many of the sessions focus on medical treatment, as one might expect given the setting, the program takes an interdisciplinary approach, with sessions on:
- Pain mangement in older people
- Palliation of symptoms in advanced dementia
- Nutrition in advanced frailty
- Escalating care vs. ceiling of intervention: two sides of the same coin?
- Advanced care planning in the community: choice or chimera?
The keynote address is "Meeting the Challenge of Delivering Quality Care for Older People in the Last Days of Life."
The website explains how to identify or establish connections for live streaming of the program to venues overseas.
Wednesday, December 4, 2013
Writer Kim Severson at the New York Times reports on the death of 72-year old Ronald Westbrook, shot by Georgia homeowner Joe Hendrix after trying to gain entrance to Hendrix's home:
"In the confusion that comes from Alzheimer’s, Mr. Westbrook had taken to collecting the mail from neighbors’ mailboxes. He was doing so that night on Marbletop Road, which is a mile or so from his home. He told the deputy he lived in a nearby house, which at one time, years ago, he had. 'Better get home,' the deputy said. 'It’s cold.'
The deputy drove on, and Mr. Westbrook, in a straw hat and a jacket too light for the weather, continued walking with his dogs. Just before 4 a.m., he was nearly three miles from home in the subdivision of modest new houses where Mr. Hendrix lives, near Chattanooga."
While the NYT story focuses mostly on the fear, confusion, and potential impact of Stand Your Ground laws, as factors potentially contributing to the older man's death, I am reminded of another story I blogged about earlier, where a wandering man with early onset dementia ended up in jail, only to suffer a brutal beating at the hands of a cellmate when authorities failed to recognize the implications of the man's confusion. Ironically, that case too was in Georgia.
In both instances, it seems that public authorities arguably had a chance to shepherd their wandering citizens to a safer setting.
Tuesday, December 3, 2013
USA Today continues reporting on criminal misuse of resident funds held in accounts at nursing homes, pointing to the lack of clear laws requiring faculities to conduct audits or other oversight systems for resident accounts:
"Federal law provides the regulatory framework for the nation's 16,000 nursing homes, which have to meet an array of standards to participate in Medicare and Medicaid. Federal rules do not require audits for resident trust fund accounts, and most states take the same approach.
The U.S. Centers for Medicare and Medicaid Services, the federal agency responsible for nursing home regulation, is considering whether additional oversight is needed to address theft and mismanagement of residents' funds.
'We are aware of this situation and are reviewing the (inspection) procedures used to detect these kinds of problems,' agency spokesman Aaron Albright said when asked about USA TODAY's findings. 'CMS takes safeguarding nursing home patients very seriously.'"
Tuesday, November 26, 2013
Free webinar: From Plan to Practice: Implementing the National Alzheimer's Project Act in Your State
Sunday, November 24, 2013
"Do Not Hospitalize" is the latest initiative in advance care directives, driven by emerging recognition of the variety of ways that individuals may not be well served by extra-ordinary care measures, requiring specific directions. The concept may require lawyers drafting traditional living wills to think more broadly. Further, the concept highlights the importance of families working directly with physicians who are sensitive to the larger dynamic.
I have to say this one hits home in my own family. My father, after physical health problems combined with larger frailty, declared at age 86, "I would rather die on the steps of the hospital" than spend another night there. That has been hard, at times, for my family to accept.
The New York Times in Judith Graham's "A Misunderstood Directive," provides a back story for the use of DNH orders. Dr. Michael Rothberg describes what occurred after his father-in-law, with severe dementia, was transferred from a care facility to a hospital for evaluation, a move that triggered even greater disorientation and reaction by the man, leading to restraints and medication. The theory of DNH is to provide a reasoned basis not to see hospitalization as the only option for patients, especially those with dementia:
"After another difficult hospitalization, this time for pneumonia, the family decided they didn’t want this vulnerable, distressed relative transferred from the nursing home again if he took ill. They asked that a “do not hospitalize” order be communicated to staff and placed in his medical record. Several months later, the patient stopped eating and drinking and passed away."
Dr. Rothberg and colleagues in Pennsylvania and Massachusetts have collaborated on a paper to describe and evaluate Do Not Hospitalize directives entered into by authorized agents (health care proxies or HCPs) for individuals with advanced dementia. They conclude:
"The potential barriers to and facilitators of HCPs initiating DNH orders identified in this study suggest that HCPs may benefit from more in-depth discussions with healthcare providers when making this decision. Interventions to address these barriers may improve the capacity of HCPs to make informed decisions about DNH orders that reflect individuals' values and wishes."
Friday, November 22, 2013
Via the Japan Times:
Humanitude, a caregiving method developed in France that emphasizes eye contact, touch and verbal communication to convey respect for the patient as a human being, is gaining attention in Japan for treating patients with dementia. Tokyo Medical Center in Meguro Ward, one of the hospitals adopting the Humanitude method, provides seminars for caregivers to expand its use. In a videotape shown at one such seminar, two nurses took a female patient with dementia to a shower. One nurse approached the woman from the front, looked at her at eye level and kept speaking to her gently while the other nurse washed her body with warm water.
The woman in her 70s, who was said to have screamed and refused to take a shower, was cooperative and remained calm, and even said that “the water temperature feels good.” The approach, with its name deriving from “human” and “attitude,” was developed about 30 years ago by Yves Gineste, who taught physical education, and his colleagues based on the philosophy of “what is humanity.”
The four basic pillars in the method are to look into the eyes of the patients, talk to, touch and help them stand upright. More specifically, particularly for elderly people with dementia, this means approaching from the front to avoid startling the patients, who tend to have a narrow range of vision; looking at them at eye level; telling them the procedures being conducted even if there is no response; avoiding gripping the patients’ wrists from above; and helping them stand upright or walk. There were remarkable scenes in the videotape that were taken in February last year when Gineste visited Tokyo Medical Center.