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Health Costs, Health Policy, Patient Care, Stanford News

A call for medical malpractice reform

Golden Lady Justice, Bruges, BelgiumA new report in the Journal of the American Medical Association offers a look at the current decline in medical malpractice suits and makes some predictions about their future. The authors include two Stanford faculty, Michelle Mello, JD, PhD, and David Studdert, LLB, ScD, who both have joint appointments at the School of Medicine and the School of Law.

Using national databases, the researchers found that the paid claims against doctors decreased between 2002 and 2013. Rates decreased by an average of 6.3 percent for medical doctors (MDs) and 5.3 percent for doctors of osteopathy (DOs). The amount of an average paid claim peaked in 2007 at $218,400, but had gone down a bit as of 2013. A post on the Stanford Law School’s blog explains why this may be a good time for policy-makers to consider reforms in the medical liability system:

“After years of turbulence, the medical liability environment has calmed,” said Mello. “Although many aspects of the malpractice system are dysfunctional, causing angst for physicians, the cost of malpractice claims and insurance have been stable for the last few years and the number of claims has been declining.”

She added, “Usually, attention is only focused on reform during ‘malpractice crises,’ but highly charged political environments are not conducive to cool-headed policy decisions. This current period of calm is a good time to be thinking about reforms that could improve our medical liability system.”

In their piece, the authors describe seven different novel approaches to medical malpractice reform, including one that encourages medical institutions and providers to communicate with complaining patients and find resolutions that might include payouts to patients before they file suit.

The paper also includes some predictions about the trends that will be important for medical liability policy in the coming decade. The authors assert that traditional tort reforms “will never deliver,” but the previously mentioned communication-and-resolution programs are likely to expand, as will “safe harbor” laws that protect clinicians and their institutions if they can show they are following a prescribed course of clinical treatment. Other trends include the increasing consolidation of health care within hospitals and large health systems. These large entities are likely to use their growing size to influence the liability system.

More ominously, authors note that liability insurance crises have happened in regular cycles since the system was expanded in the 1960s, and warn that another is imminent. They conclude their report by saying:

Action now to reduce the amplitude of the next medical liability cycle is both prudent and feasible. Further testing of nontraditional reforms, followed by wider implementation of those that work, holds the most promise. Prospects for permanent improvement in the medical liability climate depend on it.

Photo by Emmanuel Hybrechts

Cancer, In the News, Nutrition, Patient Care, Surgery

“Prehab” routines before cancer surgery help patients bounce back faster

Surgery_flickr_thinkpanamaIf you’ve ever had surgery, especially an orthopedic one, you’ve probably had rehabilitation therapy. In recent years, orthopedic surgery plans have begun to include a period of “prehabilitation” exercise to help prepare patients for their procedure. Now, researchers have demonstrated that a pre-surgery work-out routine combined with some dietary changes may be able to help cancer patients regain their baseline strength levels sooner. A story on NPR’s Shots blog described the recent study:

Researchers from McGill University in Montreal studied 77 patients scheduled for colorectal cancer surgery. A kinesiologist gave the patients aerobic exercises and strength training to do at home. A registered dietitian gave them nutritional counseling and prescribed a whey supplement to make up any protein deficits, and a psychologist provided anxiety-reducing relaxation exercises.

Half of the patients were told to start the program before surgery – an average of about 25 days before – and to continue afterward for eight weeks. The other group was told to start right after surgery.

Not surprisingly, the group assigned to prehabilitation did better on a presurgery test that measured how far they could walk in 6 minutes. And it paid off.

Two months after surgery, the prehabilitation group walked an average of 23.7 meters farther than when they started the study. Rehab-only patients walked an average of 21.8 meters less than when they started. (A change of 20 meters is considered clinically significant.) And a greater proportion of the prehabilitation group was back to baseline exercise capacity by then.

Because of the methology the researchers used, it’s not clear how the diet or the exercise prescribed in the pre-surgery regimen affected the outcome. Previous studies that looked at exercise-only regimens did not show post-surgery improvements. A larger study with a more varied pool of patients is likely needed for definitive answers.

Previously: Wellness after cancer: Stanford opens clinic to address survivors’ needs and A call for rehab services for cancer survivors
Photo by thinkpanama

Cancer, Patient Care, Stanford News, Videos

How a new Stanford program is helping transform cancer care

How a new Stanford program is helping transform cancer care

Earlier this week my colleague wrote about a new program where experienced nurses help newly diagnosed cancer patients navigate their medical care. The video above talks more about the program (“We want to take the fear away from our patients and their family,” explains oncologist Oliver Dorigo, MD, PhD) and how it fits into Stanford’s efforts to transform cancer care.

Previously: Pioneering cancer nurses guide patients through maze of care, Ironman of Stanford Women’s Cancer Center and Director of the Stanford Cancer Institute discusses advances in cancer care and research

Cancer, Events, In the News, Patient Care, Stanford News

A neurosurgeon’s journey from doctor to cancer patient

A neurosurgeon's journey from doctor to cancer patient

image.img.320.highEarlier this week, I had the chance to hear Stanford neurosurgeon Paul Kalanithi, MD, discuss living with advanced-stage lung cancer in a conversation with palliative care specialist Timothy Quill, MD. The idea for the night’s event, which was held on the Stanford medical school campus, was to provide a good example of how the doctor-patient relationship can help improve quality of life for the very sick. On stage before a packed audience, Kalanithi, prodded by Quill’s gentle but pointed questions, told the story of how serious illness changed his life. As I wrote in an online story posted yesterday:

“Are there things in particular that you worry about now?,” asked Quill… a professor of psychiatry and medical humanities at the University of Rochester School of Medicine and an expert in end-of-life decision making. “Not really,” [Kalanithi] said. “I am sad at not seeing my daughter grow up, at probably not being here long enough for her to have a memory of me. I try to worry about things that are actually changeable. I worry about getting my book finished. I’d like to have that done for my daughter to know me.”

What surprised Kalanithi most about his life after being diagnosed with lung cancer was just how hard it was dealing with those “existential” questions, he told Quill:

“Having to deal with questions like, ‘What am I going to do with my life?’ was exceedingly difficult. After realizing I wasn’t going to die in weeks or months, figuring out what I was going to do with that time was a struggle.”

Kalanithi has reorganized his priorities since his diagnosis in May 2013, setting new priorities for a much shorter lifespan than he once expected – planning for years instead of decades. He and his wife got their finances in order, they had their first child July 4. Kalanithi said he has found solace in his love of poetry, and through his writing. Kick-starting a writing career that he had planned to start in 20 years was one of those changes.

In January, he wrote an op-ed piece for the New York Times about his cross over from physician to patient titled: “How long have I got left?” He told the audience how surprised he was at the overwhelmingly positive response he received to the story. “My own thoughts on something very personal, really resonated with people. I still get an email every other day in response to the New York Times piece. It’s a great inspiration to me to remember why writing is important.” [Editor's note: Kalanithi's recent Q&A here on Scope has also drawn massive attention; it's already one of our most popular posts of the year.]

Kalanithi’s final message, particularly to those young physicians and medical students in the audience, was to listen to your patients. Take time to get to know them. Remember why it is that you went to medical school. When asked if he treats his own patients differently since his diagnosis, he was characteristically thoughtful. “I think I felt a depth that I didn’t before… But I had excellent role models. I was trained you don’t just go over what are the risks and benefits. You really try to convey as much as you can about what it’s going to feel like.” He told his favorite example of a pediatric oncologist who he observed talking to parents whose daughter had just been diagnosed with a brain tumor. The doctor’s advice: “You need to support each other. You have to prepare your patients as much as you can for that larger emotional experiential landscape. You have to get enough sleep.”

Previously: “Stop skipping dessert:” A Stanford neurosurgeon and cancer patient discusses facing terminal illness and No one wants to talk about dying but we all need to.
Photo by Norbert von der Groeben

Cancer, Patient Care, Stanford News

Pioneering cancer nurses guide patients through maze of care

Pioneering cancer nurses guide patients through maze of care

cancer-birminghamLearning you have cancer is a life-changing diagnosis. Even after the initial shock wears off, the gauntlet of medical care necessary to manage the disease can be overwhelming and confusing. At the Stanford Cancer Center, a new program that partners experienced nurses with newly diagnosed cancer patients aims to help the patients navigate the convoluted path their medical care can take.

A recent story in the Stanford Medicine Newsletter profiled Laura Birmingham, RN, (on the left, with cancer patient Sharron Brockman) and Vitale Battaglini, RN, who founded the new program. Birmingham coordinates care for patients with gynecological cancers and Battaglini works with head and neck cancer patients. They are the first people at the Stanford Cancer Center that patients meet and they stay in touch via phone calls, text messages and emails in between patient visits. The staff explained the benefits of a one-on-one program:

“Someone newly diagnosed doesn’t know what to expect, and things that seem basic to us are new to them. Our job is to be their first and main point of contact,” Battaglini said. “It’s a reversal of the traditional nurse’s role: We are the patient’s nurse, not the doctor’s nurse. And what the patient needs depends on that particular patient.”

“Cancer care has become so complex because it involves so many subspecialties,” said Julie Kuznetsov, director of the Cancer Patient Experience, who oversees the new program. “The field continues to evolve with new technologies and specialized expertise. While that means more options and better outcomes, for patients it has become more difficult to put the pieces together to coordinate their care.”

In Birmingham’s words, “Our role is to act as an agent of change in terms of the patient experience.” There are about 18 patients in the program, but that number is expected to grow quickly.

Previously: Stanford researchers examine disparities in use of quality cancer centers and Director of the Stanford Cancer Institute discusses advances in cancer care and research
Photo by Norbert von der Groeben

Cancer, Events, Patient Care, Public Health

“Stop skipping dessert:” A Stanford neurosurgeon and cancer patient discusses facing terminal illness

"Stop skipping dessert:" A Stanford neurosurgeon and cancer patient discusses facing terminal illness

terminally_ill

Updated 10-23-14: Dr. Kalanithi spoke about this topic on campus earlier this week; more on the event, and his insights, can be found here.

***

10-20-14: When Paul Kalanithi, MD, a chief resident in neurological surgery at Stanford, was diagnosed at age 36 with stage IV lung cancer he struggled to learn how to live with conviction despite a prognosis of uncertainty. He found comfort in seven words from writer Samuel Beckett, “I can’t go on. I’ll go on.”

That mantra has given Kalanithi the strength to face his own mortality and have tough conversations with his wife and loved ones about the future. Tomorrow evening, he’ll join palliative-care specialist Timothy Quill, MD, for a discussion about end-of-life decision-making. The campus event is free and open to the public; no registration is required.

As a preview to the talk, Kalanithi talked with me about his experience as a patient and about the importance of end-of-life decisions.

How has your prognoses changed the way you talk to patients and their loved ones about grim news?

In large part, the way I talk to patients and their families hasn’t changed, because I had excellent role models in training. I remember witnessing a pediatric neurosurgeon talk parents through the diagnosis of their daughter’s brain tumor. He delivered not just the medical facts, but laid out the emotional terrain as well: the confusion, the fear, the anger and – above all – the need for support from and for each other. I always strove to emulate that model: to educate patients on the medical facts isn’t enough. You have to also find a way to gesture towards the emotional and existential landmarks.

Seeing it from the other side, it’s really hard, as a patient, to ask the tough questions. It’s important for the doctor to help initiate these conversations. I think it’s worth addressing prognosis and quality of life with patients, asking them what they think. My own assumptions about my prognosis were way off base. As a doctor, you can’t provide definite answers, but you can remove misconceptions and refocus patients’ energy.

Finally, I think, if you are the oncologist, it’s important to establish yourself as a go-to for any questions. Patients are bombarded with well-meaning advice, from dietary recommendations to holistic therapy to cutting-edge research. It can easily occupy all a patient’s time, when you ought to also spend time thinking about the priorities in your life. Physicians can also advise patients, as my dad would insist, that they can stop skipping dessert.

What is your advice to patients who are struggling with the certainty of death and the uncertainty of life?

I’ve written a little bit about facing terminal illness in The New York Times and The Paris Review. I found the experience difficult. I still find it difficult. It is a struggle. The problem is not simply learning to accept death. Because even if you do come to terms with finitude, you still wake up each morning and have a whole day to face. Your life keeps going on, whether you are ready for it to or not.

In some ways, having a terminal illness makes you no different from anyone else: Everyone dies. You have to find the balance – neither being overwhelmed by impending death nor completely ignoring it.

You have to find the things that matter to you, in two categories. The first is of ‘the bucket list’ sort. My wife and I always imagined revisiting our honeymoon spot on, say, our 20th wedding anniversary. But I didn’t realize how important to me that was until we decided to go back earlier (on our 7th anniversary, instead, about four months after I was diagnosed).

The second is, as all people should be doing, figuring out how to live true to your values. The tricky part is that, as you go through illness, your values may be constantly changing. So you have to figure out what matters to you, and keep figuring it out. It’s like someone just took away your credit card, and now you really have to budget. You may decide that you want to spend your time working. But two months later, you might feel differently, and say, you really want to learn saxophone, or devote yourself to the church. I think that’s okay – death may be a one-time event, but living with a terminal illness is a process.

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Patient Care, Research, Stanford News

Fewer transfusions means better patient outcomes, lower mortality

Fewer transfusions means better patient outcomes, lower mortality

blood transfusionBlood transfusion has been cited by the American Medical Association as one of the top five most overused therapies in the United States. Moreover, studies have shown that when there are fewer transfusions in a hospital setting, patients generally do better, as they’re not exposed to potential transfusion risks.

With that in mind, Stanford Health Care has made a concerted effort since 2009 to effectively reduce the number of patients who receive transfusions. Since that time, patient outcomes have improved, including lower mortality rates and length of stay in the hospital. Moreover, blood costs have been markedly reduced, a new study finds.

Between 2009 and 2013, the number of red blood cell units transfused annually at Stanford Health Care fell almost 24 percent – from 29,472 to 22,991. At the same time, mortality rates and length of stays decreased overall among hospital patients. The decline occurred despite the fact that the volume of patients receiving treatment was higher and patients came in with more complex medical problems, according to the researchers, led by Lawrence Goodnough, MD, a professor of pathology and medicine and director of the hospital’s transfusion service.

Goodnough helped implement a program that uses the hospital’s electronic medical record system to alert clinicians to blood-use guidelines and relevant medical literature whenever they request a transfusion. The physician is asked to explain the reason for the transfusion, prompting him or her to reconsider whether it is also needed. As a result, the overall percentage of patients transfused dropped from 21.9 percent in 2009 to 17 percent in 2013, the researchers reported.

The researchers more closely analyzed outcomes for 3,622 patients transfused before implementation of the system and some 10,500 patients who received transfusions after the change. In this group, mortality rates fell from 5.5 percent to 3.3 percent. Patients also spent less time in the hospital (down from 10 to 6.2 days) and were less likely to be readmitted within 30 days.

In the process, the hospital has saved some $1.62 million annually in costs over each of the four years, not including indirect costs, such as patient testing and administration of blood, the researchers calculated.

A similar 2011 study conducted at Lucile Packard Children’s Hospital Stanford found that the automated alerts saved the children’s hospital 460 unnecessary red blood cell transfusions and $165,000 in one year, while patients who needed transfusions still received them.

“For health care institutions, improved blood utilization is accompanied by improved quality of care as measured by decreased patient exposure to unnecessary red blood cell transfusions, decreased blood transfusion-related costs and improved patient outcomes,” authors of the latest study, which appears in the current issue of the journal Transfusion, concluded.

Previously: Stanford Hospital trims use of blood supplies and New issue of Stanford Medicine magazine asks, What do we know about blood?
Related: Against the flow: What’s behind the decline in blood transfusions?
Illustration by Jonathon Rosen

Ebola, Global Health, Infectious Disease, Patient Care, Stanford News, Surgery

How to keep safe while operating on Ebola patients

How to keep safe while operating on Ebola patients

surgical instrumentsAmid the Ebola crisis, two U.S. surgeons with a combined 30 years of working in developing countries have stepped forward to help disseminate well-defined protocols for operating on any patient with the virus or at-risk of having contracting the virus.

In an op-ed piece published today in the San Jose Mercury News, the two surgeons first ask, then answer, their own question: “Why should anyone care about surgery and Ebola? Ebola is a virus.” Their answer is that patients still have accidents. They still need things like appendectomies and C-sections and treatment for gunshot wounds.

The piece points to shocking news reports like those of 16-year-old Shacki Kamara, a patient in Sierra Leone who died of gunshot wounds to his leg during the Ebola quarantine of West Point, Liberia because people were afraid to operate on him. The growing fear of operating on anyone suspected of having contracted the Ebola virus, which is transmitted by bodily fluids, is a flashback to the early days of the AIDS crisis when operating room personnel and physicians often declined to treat patients, said Stanford surgeon Sherry Wren, MD, who co-authored the op-ed with Johns Hopkins surgeon Adam L. Kushner, MD, founder and director of Surgeons OverSeas. The two wrote:

With supportive medical care, patients may survive an Ebola infection. Without surgery for severe trauma, obstructed labor, a strangulated hernia, or a perforated ulcer, some patients may die. The moral dilemma is overwhelming. How does one operate on a patient infected with Ebola, yet at the same time protect the surgical staff?

Last week, the two came together to write an Ebola surgery protocol and send it to a number of surgical organizations, and the largest one – the American College of Surgeons – immediately accepted and posted it on their website. The response to the new guidelines was immediate and overwhelming, Wren said. In Africa, 10 countries have since adopted the protocol. Press articles on the guidelines have also appeared around the world, including in the New York Times and Washington Post and on Al Jazeera. Wren told me in a phone interview that she was both a bit surprised and overwhelmed by the reaction:

I’ll tell you, it was amazing. I’ve seen very few things in surgery go that fast. There was a need to start the discussion. It was never my intent to be the definitive Ebola expert. I’ve never seen a case of Ebola in my life. We expanded existing  CDC guidelines for prevention of transmission of other infections such as HIV and hepatitis and then added common sense from years of  experience operating.

Both Wren and Kushner acknowledged the “unsung heroes” who bravely choose to treat Ebola patients and stress the importance of working to keep them as safe as possible by increasing the availability of supplies of protective gear especially in West Africa and working toward increased training for health care workers. As they state in their op-ed:

 The management of Ebola is new to many clinicians in the United States and elsewhere. We hope to see more training, protocols and personal protective supplies to lower risks to surgical staff and patients. Just as surgery is a necessary part of a functioning health system, surgery must be part of the discussion during this time of Ebola; otherwise, the death toll will not only include those unfortunate to have died from the virus but also those unlucky to have developed a treatable surgical condition in this time of Ebola.

Previously: Experience from the trenches in the first Ebola outbreak, Ebola: A look at what happened and what can be done, Paul Farmer: We should be saving Ebola patients, Ebola panel says 1.3 million cases possible, building trust key to containment and Should we worry? Stanford’s global health chief weighs in on Ebola
Photo by Badly Drawn Dad

Cancer, Patient Care

Healing hands: My experience being treated for bladder cancer

Healing hands: My experience being treated for bladder cancer

We’ve partnered with Inspire, a company that builds and manages online support communities for patients and caregivers, to launch a patient-focused series here on Scope. Once a month, patients affected by serious and often rare diseases share their unique stories; this month’s column comes from a patient who has asked to remain anonymous.

“I hate to be the one to tell you this, but you have invasive bladder cancer.”

That’s certainly the last thing anyone wants to hear from their doctor. And it’s undoubtedly news that doctors must dread having to tell their patients.

I owe a debt of gratitude I can never fully repay to all of those whose healing hands, both literally and figuratively, reached out to help me

I heard those fateful words from my urologist in August 2012, at which time I was informed that my best course of action was to undergo chemotherapy treatments and have my bladder completely removed. Oh yeah, my prostate had to go as well.  “You’ve got to be kidding me,” I thought. “I’m 46, healthy, and serious health issues aren’t supposed to happen until I’m old – like 70 or something.”

So began my journey of cancer treatment, which included three rounds of neoadjuvant chemotherapy and culminated in the removal of my bladder and prostate. Like many who have to get on the roller-coaster ride that is cancer treatment, my road to recovery was rocky at times.

During a bladder biopsy and resection procedure, the doctor determined that the tumor in my bladder was blocking my right ureter, putting the kidney at serious risk. I was rushed to surgery where I received a nephrostomy stent. Two weeks later, a port-a-cath (for administering the chemo infusions) was placed in my chest; and three days after that, it had to be removed due to an infection. Then came the chemo, which was certainly no picnic – I suffered from a variety of side-effects, not the least which was becoming seriously neutropenic. Later, following surgery, my heart went into A-fib and I was whisked off to intensive care.

One of the ironies of my experience: Prior to the cancer diagnosis, I had never even spent a night in the hospital.

As most anyone who has gone through this experience can attest, it really kicks your ass physically, emotionally, spiritually, existentially, and about every which way in between. The good news today, though, is that I’m cancer free and my prognosis for long term survival is very good. I feel better physically than I’ve felt since this whole circus started, and I’ve resumed most of the activities I previously enjoyed before the cancer diagnosis. Nonetheless, healing emotionally from the trauma of the whole experience – including life with a urostomy – is still a work in progress.

Recently, I’ve been reflecting at depth on my journey with the Big C. During my treatment I interacted with an untold number of health professionals. From doctors and nurses to social workers and massage therapists, scores of health-care professionals and related practitioners were involved in helping me get better. I am in utter awe when I think about the years of training that each of these individuals received; the fortitude it must take to deal with the sick and infirm on a daily basis; the medical research behind the development of lifesaving chemo treatments; and surgical procedures like the cystoprostatectomy.

I owe a debt of gratitude I can never fully repay to all of those whose healing hands, both literally and figuratively, reached out to help me. Like my feisty little 70 year-old home health-care nurse Jackie, who told me, “During chemo, you’ve got to keep moving! Get out there and walk every day, stay active. You won’t feel like doing it, but do it anyway!” I followed her sage advice and sure enough, it really did help. Jackie also coaxed me through a very rough time after the removal of my port-a-cath when I was told I would need to stuff gauze in my gaping open chest wound on a daily basis. Jackie was right there, providing me with the encouragement and support that enabled me to get this done.

Then there were the various residents and fellows who provided for my care. The competency and kind bedside manner of the chief resident in urology helped me calm down and enabled me to wrap my head around what I was facing when I was first diagnosed. The expertise, professionalism, and compassion exhibited by the fellows who were involved in my surgery and subsequent care in the hospital were also appreciated.

And let’s not forget the attending physicians, whose years of education, training, and experience enabled them to do things that 100 years ago would be considered no less than an absolute miracle.

To all those in the health-care field who touched my life during this journey, my unending gratitude. To those who are answering the call to provide professional medical care for others, my sincerest respect.

The author of this article lives in Virginia and works in administration at a large hospital.

Aging, Health Policy, In the News, Neuroscience, Patient Care

The toll of Alzheimer’s on caretakers

The toll of Alzheimer’s on caretakers

Loving Hands Vannesa Pike-Russell FlickrMy last grandparent, my paternal grandmother, passed away earlier this year. She lived into her 90s and, like both my maternal grandmother and grandfather, she suffered mild to moderate dementia in the final years of her life. My mother cared for each of them as one by one their health declined. She had ample support from our extended family, but she was the one who had to bathe them and help them go to the bathroom or remind repeatedly them that so-and-so relative had died many years ago. My parents’ experience taking care of elderly family members who no longer had their full mental faculties lasted two to three years in each case, unlike people who care for family members with Alzheimer’s disease – a task that can last a decade or more.

Last week, Tiffany Stanley wrote a feature in the National Review about her experience caring for her ailing aunt, Jackie, who was diagnosed with early onset Alzheimer’s. Stanley’s father had been caring for his sister when his congestive heart failure made him too ill to continue, so his 29-year-old daughter stepped in. She was unprepared for the realities of caring for an Alzheimer’s patient, and she chronicles her experiences with touching anecdotes about her family’s experiences, as well as a detailed look at Alzheimer’s care in the U.S. She also details the impact the disease has on caregivers:

Alzheimer’s places a heavy toll on family caregivers. Their own health suffers. Dementia caregivers report higher rates of depression and stress than the general population. Some studies show they have an increased risk for heart disease and stroke as well as higher mortality rates. Their own use of medical services, including emergency-room visits and doctors’ appointments, goes up, and their yearly health care costs increase by nearly $5,000, according to research from the University of Pittsburgh and the National Alliance for Caregiving. “Caring for a person with dementia is particularly challenging, causing more severe negative health effects than other types of caregiving,” reads an article in the American Journal of Nursing.

Stanley also writes about the tension between funding a cure – to keep people from spiraling late stage dementia – and caring for those who are already sliding down that route:

Lost too often in the discussion about a cure has been a much more basic, more immediate, and in many ways more important question: How can we better care for those who suffer from the disease? Dementia comes with staggering economic consequences, but it’s not the drugs or medical interventions that have the biggest price tag; it’s the care that dementia patients need. Last year, a landmark Rand study identified dementia as the most expensive American ailment. The study estimated that dementia care purchased in the marketplace—including nursing-home stays and Medicare expenditures—cost $109 billion in 2010, more than was spent on heart disease or cancer. “It’s so costly because of the intensity of care that a demented person requires,” Michael Hurd, who led the study, told me. Society spends up to $56,000 for each dementia case annually, and the price of dementia care nationwide increases to $215 billion per year when the value of informal care from relatives and volunteers is included.

The story is equal parts frustrating and heart-wrenching, but I came away much better informed about what a diagnosis entails, not just for the patients, but the families connected to them.

Previously: No one wants to talk about dying, but we all need to, Mindfulness training may ease depression and improve sleep for both caregivers and patients, Can Alzheimer’s damage to the brain be repaired?The state of Alzheimer’s research: A conversation with Stanford neurologist Michael Greicius and Exploring the psychological trauma facing some caregivers
Photo by Henry Rabinowitz

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