By Jessie Gruman. “Buck up. You are going to feel bad for a year.”

This was my chemotherapy nurse a year ago, returning a call I made to my oncologist. I had left a message asking whether there was something he could do to help me. Should I feel this horrible following three action-packed months that included stomach cancer surgery and aggressive chemotherapy? 

The answer, at least as far as my nurse was concerned, was “Yes.” 

And she was right. It did take a year to regain my energy and feel well again.

The new year set me reflecting about what I’ve learned about being sick over the past 12 months that only the experience itself could teach me:

You know that old Supremes song, “You Can’t Hurry Love”? I learned that you can’t necessarily hurry healing either, even if you work hard at it. A week after that call to my oncologist – still feeling rocky – I joined a local gym’s “$30 for 30 days” New Year’s special to try to revive my cardiovascular fitness. For each of the next 30 days, I trudged down there, got on that Nordic Track machine and forced myself to flail about for 40 laborious minutes. On most days last year, I made myself walk at least a mile and practice yoga. I did my level best to choke down a tiny healthy snack almost every waking hour. Often, doing these simple tasks took all the energy and will I possessed. But I was committed, convinced that if I did them, I would get better faster.

And it still took a year before I felt normal again. How frustrating was that?

I have absorbed the very American notion that success results from hard work. By extension, health should be achievable if we comply with the admonitions of our employers, the media and health promotion advocates to exercise and eat right. I knew that my behavior didn’t cause my cancer and wasn’t going to cure it. But surely, I thought, I can speed up my recovery from the assault of chemotherapy and surgery if I really try. I had great expectations. So did those around me: “Why is she still so frail?” “Why isn’t she better yet?”

I might still be feeling pokey if I hadn’t worked so hard at recovering. But this experience slammed me up against the reality of physical illness and the limits of behavior in changing its course. It reminded me how a deep belief in our own efficacy makes it easy to slip into blaming ourselves (or the sick person) for not getting better. And it reminded me of how unruly, unpredictable and often uncontrollable the effects of disease and its treatment are on our bodies.

Another lesson: I expected that Health Information Technology (HIT) advances and opportunities to connect with other patients using social media would dramatically change my experience of treatment in contrast to my previous three experiences with cancer.

I was dazzled by the ease with which I was able to collect the information and evidence I needed to make good decisions about my treatment plan. And I am grateful for online access to friends and colleagues all over the world that allowed me to feel less isolated over this past year than I have during previous illnesses.

But once I started treatment, feeling ill extinguished my curiosity about my disease. It dampened all interest in second-guessing treatment decisions or seeking innovative approaches or learning about new technologies to aid my recovery. And only occasionally could I summon the energy to reach out even to close friends and family, much less to seek out people like me online for advice and support.

I see embedded in the enthusiasm about patient portals, decision aids and smart phones an attitude that being actively engaged with new technologies can somehow provide happy relief from the pain and discomfort of illness. Bright health information Websites, fun games designed to inspire adherence and smart medication reminder apps are presented as having the potential to turn the experience of illness into a series of problems that are easily solved through the acquisition of the technologies.

It’s true that HIT can help with scheduling appointments, refilling prescriptions and coordinating the disposition of test results to different clinicians, for example. (My clinicians mostly don’t use electronic health records with patient portals, so I had no respite from those tasks). And remote patient monitoring and assistive devices already make some caregiving chores easier. These are welcome contributions, especially as more responsibilities for care are shifted to patients and their families. But I return to the world of the healthy with the impression that the value of HIT is tactical, not transformative, at least for the sick person: the suffering remains.

My third insight from the past year is that most of the time I believed I was thinking clearly but in hindsight, I see that my judgment and thought processes were often clouded. Through my experience with serious illnesses, I’ve developed strategies for getting through the days. For example, regardless of how I feel, I always bathe, dress, eat breakfast and put my shoes on. The shoes were important: they serve as an optimistic signal to myself that I’m well enough to get up and go outside just like anyone else. Between the shoes and my exercise/diet routine, I could sometimes convince myself that I had returned to my former healthy state (conveniently forgetting my need to lie on the couch for hours).

But I had not recovered, and the clarity of my thinking was often – although not consistently – compromised. I scheduled events and travel that were unrealistic, given my stamina, and when I couldn’t be dissuaded from following through, I’d spend days recuperating. Again and again I disappointed myself (and others) by setting ambitious goals for commitments I couldn’t meet.

I know I am not unique in this. I watch friends and colleagues whose judgment is impaired by illness make similar, often higher-stakes errors. They make weird self-care choices, abruptly change treatment decisions, fire their physicians and refuse to seek advice about clearly serious conditions. We all believe that we are making rational choices when we do these things. But we aren’t, and the impact on our health and recovery can be serious.

I wanted to write about these three insights while they are still vivid for me. Standing for the past couple months on the shifting border between illness and health, I’ve experienced how (fortunately) easy it is to forget how illness eats away at the balance of one’s mind, body and spirit. As a mostly ill person glancing into the world of the healthy over the past year, I’ve marveled at the insensitivity and indifference to this imbalance by even those with the greatest love, or best intentions, training and experience.

The tools, technologies and services that constitute health care will never completely eliminate the suffering caused by illness, even if they are perfectly delivered. But that suffering might take a more modest toll if all of us – patients, professionals, caregivers, family, friends and colleagues – have clearer expectations about the arc of illness and how it affects and can be affected by each of us.

In the end, that curt directive by my chemotherapy nurse to “Buck up. You are going to feel bad for a year,” was the most helpful advice I received.

The day may come, however, when our family may need to provide her with the support I see my friends providing to their parents. Some individuals who would like to be more independent, can’t be. The enabling systems to allow that aren’t sufficiently well developed and public policies haven’t yet caught up with the needs of older people and their family caregivers.

That’s why just a few weeks ago Disruptive Women launched Health In Place. This blogsite reported on the launch event. I recommended it as reading to catch up on and a movement to follow – and better yet, engage in.

Perhaps it was HIP that raised my own awareness and made a very small article news article jump off the page over the holidays.

It was about the Aetrex GPS Shoe (www.aetrex.com/aetrex-gps/), which uses GPS tracking technology embedded in the right heel to do real-time tracking of the wearer.  GPS tracking sends a signal to a central monitoring station to show the wearer’s location and relays that information to a tracking website for monitoring by caregivers.

Even better, caregivers can set up a geographic boundary known as a “geozone” and if the individual wanders off and leaves it, are notified via an email or SMS text to a mobile phone. Caregivers can also get emergency tracking in case they need to locate a loved one immediately.

What a wonderful application of availably technology to health and caring. I’ve written extensively about the nature of healing and healers and how our traditional definitions (which restrict “healers” to those in clinical roles) are narrow and no longer sufficiently embracing of the variety of those who contribute to our health and care.

I’m not sure if the folks at the GTX Corporation (www.gtxcorp.com) believe they are healers, but in my book, they are. Bravo to them for what they’re doing to contribute to lowering costs of care, lowing the risks associated with family caregiving and improving the quality of life for those involved.

The following is a guest post by Ms. Nasreen Sulaiman a Senior Instructor at Aga Khan University School of Nursing. She  has worked with palliative patients.

By Nasreen Sulaiman. Palliative care is an urgent humanitarian need for people worldwide with cancer and other chronic fatal diseases as it provide comfort and ease suffering. Nearly 80 % of the cancer patients in Pakistan present late in stages 3 & 4 with terminal disease.  In Pakistan, the concept of palliative care is in its infancy stage and need to be strengthened. In Karachi, one of the mega cities of Pakistan, only two hospices each of 20-25beds provides palliative care services where the health care professionals’ main focus is on providing the physical aspects of care. Pain management, a crucial aspect in the palliative care still remains partially addresses due to lack of narcotic supplies and other medications.  Furthermore, I strongly feel that other than providing pain and symptom relief measures, the social, emotional, and spiritual needs of the patient should also be given prime importance in order to provide holistic care to the patients. Nurses need to learn to utilize various non-pharmacologic measures such as therapeutic communication techniques, use of humor, guided imagery, therapeutic touch, relaxation exercises, religious songs and other diversional activities in order to ease the suffering, emotional distress and provide optimal comfort and support to the patients including their caregivers. Moreover, in palliative care settings, caregivers hold a great importance as they are the ones who are providing the total care and most of the time with the patients. Caregiver role strain is an essential area to be looked at. Caregiver support is another area to be looked upon. We need to establish caregiver self-help groups or other avenues to support the caregivers as they go through lot of emotional pain and need immense help and affection which may assist them to perform their roles effectively with the patient suffering from the disease.

Caregiver supports are defined by the Scorecard to include:

• Percent of caregivers getting needed support
• Legal and system supports for caregivers
• Health tasks able to be delegated to aides.

The Scorecard showed that 77% of family caregivers who were surveyed a few years ago reported that they get emotional and social support when they need it.   Legal and system supports scores were much lower, averaging a “3″ on a 12-point scale. These supports  were defined as:  state family medical leave laws;  mandatory paid family and sick leave; protection of  caregivers from employment discrimination; the  extent of financial protection for the spouses of  Medicaid beneficiaries who receive nursing home or  long term community support services; and  assessments of the caregiver’s health, quality of  life, etc.    The researchers also proposed that family caregivers would benefit if state nursing license laws permitted aides to perform a list of key “health maintenance” activities, such as administering medications, and diabetes testing and injections.

You can view your state’s score on the Scorecard’s  interactive website at: http://www.longtermscorecard.org/

We live in Virginia, so I looked up my state’s ranking  among the 50 states and D.C.

• Overall, Virginia somehow ranked a 12 out of 51.  Minnesota was #1, the best in the country. Mississippi was #51, the worst.     I think Virginia’s high overall rank was skewed  by the high ranking for “affordability,” which in  itself is a little misleading. Nursing home annual  costs were “only” 196% or about 2 times annual  median income in the state, and annual home health  costs “only” 70% or about 3/4ths of annual median  income.
• Virginia ranked 16th for our State Medicaid  program giving choice of setting and provider; and  25th for quality of life and  quality of care.
• Virginia did not do so well in its “Support for Family Caregivers,” ranking 44th in legal and system supports–a dreadful 1.6 on a scale of 0-12.  I guess we’re a friendly state (our motto is  “Virginia is for Lovers”), because 81% of  caregivers said they usually get needed emotional  support.

AARP and the other Scorecard developers hope that consumers will use this data to push their state governments to do more to provide long term services and supports in the community, mostly funded by the federal-state Medicaid program.

Meanwhile, Medicaid program funds have been targeted as a potential source of cut-backs by the House-Senate special deficit reduction super-panel.   AARP and 70 other volunteer groups supporting people with disabilities will be holding a rally, “My Medicaid Matters,” at noon on Capitol Hill in  Washington, DC, on Wednesday, September 21.  Details at: http://www.adapt.org/main/medicaid_rally

I plan to send the link to this Scorecard report to my elected officials and ask them to help improve community services.

Eleanor Clift

Veteran reporter Eleanor Clift wrote the essay Hospice And The ‘End Game’ after her husband’s death from cancer. In it she concludes that hospice “should be front and center in the debate over the kind of health care future that we want.” Disruptive Women plans to cover the topic of hospice, end of life and caregiving next year, so stay tuned.

Read the essay here.  To listen to a podcast of the essay click here.

The essay appears in Health Affairs‘ August 2011 issue.

The following is a guest post by Kathy N. Johnson, PhD, CMC. Dr Johnson is a Certified Geriatric Care Manager, Founder and Chief Executive Officer of

By Dr. Kathy Johnson. Family members who provide care for a chronically ill, disabled, or aging parent make up almost 30% of the U.S. population. The majority are women, ages 40-65, and they spend an average of 20 hours per week in hands-on care giving. Family caregivers are often adult daughters who are also caring for children and juggling job responsibilities, household chores, and the needs of a spouse.

If you are in this “sandwich generation,” the pressure to do it all makes you particularly vulnerable to stress. Research has shown that nearly 75% of caregivers report not going to the doctor as often as they should; 63% have poor eating habits; and 58% indicate that their exercise habits are disrupted by care-giving responsibilities. 

Being a family caregiver is never easy. However, many women feel so overworked and unappreciated that they are unsure about their ability to continue being a caregiver. The daily emotional and physical demands of the care-giving process often lead to feelings of burnout.

The Signs of Burnout

Psychologists define burnout as “a debilitating psychological condition brought about by unrelieved stress.” Burnout isn’t as obvious as getting a sore throat or the flu, and family caregivers often deny or are oblivious to the signs of burnout. Sometimes burnout is noticed first by other family members and friends around you. Pay attention to these warning signs:

• Feeling pessimistic and dissatisfied
• Decreased energy or emotional exhaustion
• Withdrawing from friends or social interactions
• Loss of interest in work or enjoyable activities
• Increased use of alcohol or medication to relax
• Becoming impatient, irritable, or argumentative
• Lowered resistance to illness

Preventing Burnout

The most important step that you can take to combat burnout is to closely monitor your stress level. A high stress level lowers resistance to disease and leads to fatigue, depression and eventually, burnout. The following strategies can help: 

• Find a caregiver support group. Most communities have services or groups where you can confide in others who are also caregivers and receive emotional support. Call your local senior center, area Agency on Aging, hospital senior services, physician or church. If you can’t leave the house, search the Internet for support groups.
• Set reasonable limits. You can’t be a successful caregiver if you give until there is nothing left. Be realistic about how much time and energy you can devote to care giving and know when to stop. Prioritize tasks and only do those that really have to be done. Whatever condition or problems your loved one has, realize that you can’t cure it or control it any more than you can meet every need.
• Take care of your health. You owe it to yourself to make time for your own heath. Take a walk or do some form of regular exercise at least 20 minutes, two or three times a week. Be sure to eat a variety of foods, including the 7 super foods—blueberries, dark chocolate, fish, nuts, eggs, vegetables and flax seed. Also make sure to get at least six to eight hours of sleep per night.
• Incorporate joy into your life. Do things you enjoy on a daily basis. Listen to music, garden, cook, go see a movie, or just walk the dog. Think about activities you’ve done in the past that you found enjoyable, and find pleasure in little things in life.
• Start a journal. Writing is a great way to express emotion and regain perspective. Caregivers often feel conflicting emotions. Write down what you feel and accept the good and the bad. You might even start your own care-giving blog.
• Schedule pampering time. Reward yourself by taking breaks from your care-giving routine. Call your local spa for a massage or manicure. Soak in a warm bath. Go to the mall and buy something new. Find an activity that will rejuvenate your energy.
• Reach out for help. There are a many resources for help with care-giving responsibilities. Call a friend, family member, or even a volunteer from a senior center or church and suggest specific things that they can do to help you. You can also hire a caregiver from a reputable home care agency, like Home Care Assistance, to provide respite care so that you can recharge.

Being an effective caregiver means learning how to take care of yourself so that you can provide healthy support and love to others. These strategies will help you be a better caregiver and avoid the debilitating effects of burnout.

Help Wanted? is an apt title for the report from The Organization of Economic Cooperation and Development (OECD), subtitled, “providing and paying for long-term care.” The report details the complex forces exacerbating the LTC carer shortage, focusing on the fact that current policies to address this future are fragmented and piecemeal. Instead, OECD argues, policymakers must smartly weave together a comprehensive approach that addresses the many facets of the problem.

Statistically, in today’s world, 1 in 5 LTC users is under 65 years of age; one-half are over 80. Most of the LTC services paid-for are based in institutions: 62% of total LTC expenditures occur in institutional settings, not at home.

That simple aging demographic is the first aspect to consider: in 1950 under 1% of the global population was over 80. By 2050, that share will increase from 4% in 2010 to 10% in the OECD countries.

Today, it is informal, unpaid caregivers — usually family carers — who bear the brunt of long-term care.

Health Populi’s Hot Points:  The report states, “Family carers are the backbone of any LTC system.” That backbone is breaking in developed countries. More than 10% of adults over 50 living in an OECD country provides help with personal care to people who have limited ability to care for themselves. Without support, OECD says that caregiving is associated with a reduced labor supply for unpaid work, higher risk of poverty, and a 20% greater prevalence of mental health problems.

Supporting family caregivers is key to strengthening the backbone, and financial health, of long-term care infrastructures around the world. OECD’s solution is several-fold:

• First, to design financial support programs for caregivers in the form of allowances and cash benefits that would be paid to care recipients, which would increase the supply of family care.
• Second, to promote better work-life balance through family leave programs. While childcare leave is fairly common in most countries, family care (say, for aging parents) is not. Flexible work arrangements are a core part of this solution for carers working in full-time jobs. Care leave is most prevalent in Denmark, Poland, Finland, the Netherlands, Hungary, Sweden and Belgium.
• Third, support services such as respite care, training and counseling are key to managing eventual carer burnout and loss of personal control.

Still, even with these supports, OECD believes that over-reliance on family carers is not optimal. It’s the formal, labor-intensive LTC sector, that needs addressing. Currently, that sector is marked by high turnover and low retention, largely due to low pay, and lack of professional training and recognition and lack of technology support.

Improving job quality is key for LTC workers. The technology aspect could greatly turbocharge worker productivity and enhance job satisfaction, which better managing costs that are currently eaten up in institutional care. Implementing remote health monitoring, electronic health records, and personal safety response systems would keep older people safer and healthier at home, while enabling care workers to truly care and reduce their paperwork load and administrative hassle. Financing policies that speak to infrastructure-independent health care — not tethered to institutions — would move care back into peoples’ homes, where most would prefer to be to age in place and continue to be part of their local communities. Home care is a lower-cost alternative to institutional care today. As technology evolves to provide more care in home settings, evidence is gathering to prove cost-effectiveness of these approaches for chronic conditions like heart failure, COPD, and cancers. Furthermore, peer-to-peer care via online social networks can help homebound people feel and be connected with both people like them and caregivers.

While home-based LTC may not be clinically appropriate for very sick and/or frail seniors, appropriate utilization of institutional settings could be sorted out using clinical protocols and assessment tools.

Originally posted on Health Populi on May 31st.

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CaringBridge is a non-profit and its service is 100% free for anyone who needs it. It gives patients and caregivers a way to receive support, and friends and family a way to provide it. Sona summarizes some of the benefits as:

• Saving time and emotional energy of communicating with everyone individually
• Providing personal and private spaces for sharing 
• Bringing people together when health matters most

80% of patients and caregivers have indicated that connecting with their friends and family on CaringBridge has positively impacted their healing process.  Now that’s saying something!

Don’t forget to join us on Facebook, Twitter, LinkedIn, and YouTube. 

I still vividly remember cheering for every small sign of recovery, like his giving a thumbs up when the doctor asked how he felt and the day he first sat in a chair.

Paul’s brain surgery was performed in a downtown hospital.  This was 25 years ago. He was in intensive care, then in a neurosurgery room for almost a month before being transferred to the rehabilitation floor of the hospital for two months of intensive physical, occupational and speech therapy. During that time, many of his co-workers and friends visited often during lunch or right after work, since the hospital was in a central location and near a subway stop.  I would come in most mornings before work, then later in the day on my way home.

When Paul’s rehab benefits ran out, we had a big decision to make. We clearly wanted to continue a full schedule of rehab. Fortunately his parents were able to help with the cost. Our choices were:  stay as an inpatient in the downtown hospital, go to another inpatient rehab hospital in the suburbs or out-of-town, or live at home and have outpatient rehab.  I did all the leg work on this, with the idea that I would take Paul to see the final choices.

I was trying to figure how much rehab we could afford, and if one more month of inpatient rehab would be the “cure,” since I was both inexperienced with the recovery process, and too young to believe that it would take more than a few weeks to heal. When I met with Paul’s rehab team, they told me to expect many more months of rehab, and even so, that we needed to learn how to live with Paul’s disabilities now. This helped clarify the need to bring Paul home and arrange outpatient rehab, which was the best use of our money, not to mention the fact that Paul himself was tired of being away from home.

Looking back, I believe that a vital part of Paul’s rehab and recovery was the easy access for his co-workers and friends during his inpatient time, and the ability to visit familiar places once he came home. His link to the community remained unbroken.

Therefore, I am a little concerned about Rep. Giffords’ family moving her to Houston for rehab. Even though it may be a world-class center, it’s missing a very key element: the co-workers, neighbors, friends, and Tucson community who will do anything to help. Did you see the little boy who donated $2.47 because he thought she might need it? Certainly Tucson has very capable rehab professionals, not to mention a leading center for speech-language pathology.

The decision is difficult, complicated by Rep. Giffords’ lifestyle, living in three cities: Tucson, Washington, DC, and Houston. Her husband’s job and support system is in Houston, and as one caregiver to another, I certainly recognize his need to have his people around him and return to his routine (if being an astronaut is “routine” in any way).

To promote Rep. Giffords’ return to independence and to keep her links to her home town and her DC life, I believe that regular trips to Tucson and to DC should be part of her rehab plan.

I have learned that you make the best decision you can at the time, keep your sights on the future, and don’t look back.

Sara Palin started this rhetorical myth when she declared efforts to incorporate paying for such conversations under Medicare in the House health care reform bill (not included in the final law) as creating “death panels”. This lie is undermining advances that advocates for better end-of-life care have worked on over the past decades. While the Times article quotes an unnamed White House official as saying that this reversal will not preclude these conversations happening anyway, the reality is that conversations about the treatments one wants and doesn’t want at the end of life take time. If this time isn’t paid for, the conversations will not take place or will not be as thoughtful as they ought to be.

In 2010, the American Academy of Nursing convened a task force to develop a policy brief on end-of-life conversations (PDF) to counter the distortions of the “death panel” rhetoric. One of the recommendations is paying for these conversations — not just for physicians, but for nurses and social workers who may be the providers who patients and family members seek out to discuss these difficult issues.

Palin’s political rhetoric has co-opted reasoned discussions of policies to support better end of life care. I have talked with leaders of national consumer organizations, health-related organizations (including insurers), and foundations that are reluctant to engage in public discussions of end-of-life decision making because of how politicized the issue has become. Now the Administration runs in fear, too.  Those of us who know the evidence supporting better and more frequent conversations about end-of-life preferences, those of us who have seen people die a horrible death that is prolonged from unnecessary and agonizing medical interventions that are assaultive, those of us who have been part of someone’s experience of dying according to their own values and preferences and who know that dying can be as journalist Robert Lipsyte once described as “the richest of experiences” in his book In the Country of Illness — all who know how difficult, yet crucial end-of-life conversations are must not fear publicly challenging the myth of death panels. We need to point out that the real “death panels” are what occurs now when health care providers make the end-of-life decisions for someone who has not had the opportunity to explore and write down their preferences. Silence means that the death panels win.

Medical technology–drugs and devices–have improved so much over the past 20 years that if Paul’s aneurysm had ruptured today, he might have recovered with little or no disability. The CT scan he had 20 years ago was state-of-the-art, but the neuroradiologist could not localize Paul’s aneurysm. Today’s CT scans are so much better and MRIs are readily available in most cities and large towns that I’m sure they could find it immediately.

His only treatment choice back then was to open his skull, expose his brain, and place a metal clip on the aneurysm. Today, neurosurgeons have an option of a minimally invasive procedure to thread a coil and/or stent up through the blood vessel to block off the aneurysm.            

Twenty years ago, to learn all I could about aneurysms and stroke, I had to find a medical textbook. Fortunately, I worked in the same building as the American Medical Association’s Washington, DC office, and was able to find a book on neurosurgery. Today, you can “Google” aneurysm and stroke and find thousands of entries, with excellent sources accessible online like the National Institutes of Health, leading research and treatment centers like the Mayo & Cleveland Clinics, and information for patients from the medical specialty societies and volunteer health organizations. And with online support groups, there are opportunities to chat with other caregivers, for a comforting sense that you are not alone. 

Taking advantage of everyday technology like computers and cell phones have offered more options, for example, Lingraphica and other makers of assistive communication devices have been able to shrink the size of their products from the bulky laptop-type devices of 15 years ago to “apps” for cell phones. 

Indeed, the computer, the Internet, and cell phones have made caregiving easier by improving access to information, building communication options, and knowing that Paul and I can reach each other immediately with a click of the mouse or cell phone speed-dial.

From Public Information to Private Rooms

Recently, the Washington Post wrote about the “new” trend in hospital remodeling to provide more private rooms.

Twenty years ago, the old George Washington Hospital rehab floor had mostly double rooms, but they also had a few with four beds. One of the staff at the time told me that the rehab patients enjoyed the camaraderie.  During the day, the patients were in and out of the room, but they did spend hours either sitting in the hallway or in their beds with their roommates. After work and on weekends when family visited, the cramped space made the time together difficult. 

Today, the new George Washington Hospital rehab floor has many private rooms, and the philosophy that the patients need the quiet time after a day of vigorous therapy activities.  It is a great program, with   state-of-the-art facilities.

In my opinion, having helped my mother through hip surgery last year and paying extra for the private room, this phase reflects both positives and negatives.  The positives:  the family has more room to visit, and the patient can get more rest. Also, there is more room for your own private duty nurses or aides to attend the patient.  The negatives:  family members staying over and/or private duty attendants are an absolute necessity because the hospital nursing staff is stretched too thin.  Years ago, you had to fight to stay over or have private attendants; today, the staff welcomes and encourages the extra help. 

Not everything has improved, however. Twenty years ago, Paul stayed in the hospital receiving inpatient recovery and rehabilitation services for three months. Today, Medicare and private health insurance coverage for post-stroke rehabilitation is severely limited, and I have not met anyone in recent years that had the generous coverage that Paul enjoyed immediately after his stroke. 

Even so, physical, occupational, speech therapy, rehabilitation and caregiving approaches continue to advance, with many new drugs and devices available to enhance treatment and function.

* This post is part of the Disruptive Women series on innovation.

Organized medicine continues to be stuck on protecting its view of its turf. In a statement issued after the IOM report was released, the American Medical Association (AMA) claimed that only physicians can lead health care teams because they are more educated than nurses. They claim it’s a matter of quality and safety, but they are ignoring the evidence to the contrary that is laid out in the IOM report. To better understand the origins of this turf battle, read Chapter 3 of the IOM report and look at the work of legal scholar Barbara Safriet.

What the AMA doesn’t seem to understand is that the future of health care requires skills that other health care providers have. Especially in primary care, clinicians need to emphasize health promotion, chronic care management, and care coordination. Physicians are highly trained diagnosticians of disease and surgeons, but this is a narrow skill set for primary care. The ideal is to have primary care physicians who can provide that expertise when needed but be on teams that may be headed by them, nurse practitioners, nurse midwives, social workers, or others. For example, for people with chronic mental illness who have developed important relationships with mental health practices, the social worker may be the best person to head the team.

Nurse-managed health centers have demonstrated that nurses can lead primary care centers that are health or medical homes using interprofessional teams that include physicians. We know that nurse practitioners can do 90% of what primary care physicians do with comparable outcomes, plus the health promotion and care coordination.

If we all can keep our eye on the real aim defined by Jack Rowe—focusing on what people need to promote health—the approaches to health care will become clear. Here’s hoping that the AMA achieves an understanding of this essential point soon.

This amazing achievement is no accident. The ethos of nursing, since Nightingale, has gone well beyond the familiar “Do No Harm”. Ours has been an ethos of patient advocacy. We teach and enforce it with the same intensity of focus we give to medication administration. I think of it as a hybrid ethos, merging the principle-based ethics of Lawrence Kohlberg (read masculine) with the relationship-based ethics of Carol Gilligan (read feminine). Early on, as we became increasingly adept at articulating our “Code of Ethics”, the Hastings Center fretted with our fixation on patient advocacy.  We insisted and persisted. I am proud of that.

This persistence about patient advocacy shapes the daily lives of practicing nurses. It is achieved in health care settings where hierarchic structures are designed to protect the hegemonic power of physicians and health care administrators. It is perpetuated in civic discourse. It is rarely visible, often only made public in whistleblower lawsuits where a nurse was fired for being a patient advocate, i.e., challenging a practice or person that puts the patient at risk.  It is complex work, behind the scenes, often made exceedingly difficult and even career threatening.

When I was a very young nurse, a nurse leader advised me as follows: “If you haven’t been fired by the time you reach the age of 30, you probably have been co-opted”.  At the time I found this advice disturbing. Over time, through a number of experiences that pivoted on professional integrity and the cost of protecting it, I have learned the wisdom of her message. I agree with her.

The media exacerbate the challenge. It may surprise the sponsors of “Nurse Jackie” to discover that thousands of nurses every day take on the challenges she faces and do so without becoming addicted to drugs. Finally, a nurse that is a patient advocate, but apparently only able to do so while abusing drugs and having affairs. The distortion of nurses and nursing by the media is as troublesome as their willingness to render us invisible or their naïveté about who we are, what we do, and how we do it.

But indeed, we persist. We advocate for our patients with a fierceness unknown to most patients and families. We view it as a matter of ethics. As with other fields of endeavor, we have a normal curve distribution of effectiveness in our efforts, courage in our convictions, and success in our outcomes. Nonetheless, I will give here the advice I give to anyone facing an important health event.

Find the best nurse you can. Tell that nurse that you have selected them as your personal advocate. These advocates should be taken to appointments, charged with asking important questions, protective as needed. These advocates should be at bedsides before, during, and after surgeries and other important medical procedures. These advocates should be encouraged to question whatever needs questioning on the behalf of their patients. Most nurses understand this role: they have been doing it for family and friends their entire careers. It would also be nice if you would acknowledge the gift they give in doing this important work.

Patient advocacy, for nurses, is an issue of professional ethics. Count on it!

So I decided to create a medication chart that allowed her to track her medications more easily and ensure she was taking them correctly. We then showed the chart to each of her physicians and pharmacist.  The result was a dramatic change in my mother’s medication regimen.  The chart enabled her physicians to view what they and all her other doctors were prescribing. They soon realized just how many medications she was on and that some medications were actually counteracting others.  Many prescriptions were changed or stopped and over time she went from taking 16 medications to nine.

Adverse events related to medications are the fourth leading cause of death in U.S. for patients over the age of 65.  This startling statistic led me into the patient-advocate role.  Since that time my own experiences have continued to reinforce my belief that individuals need to take control of their health and work to make sure all their healthcare providers, caregivers, and/or family members are working together as a team.

After being faced with several health scares in 2008, I decided to have an MRI breast scan for peace of mind.  I had learned that the scan was the best diagnostic and screening tool for women with large, dense breasts and a family history of breast cancer.  Since I had a mammogram six months earlier, which was normal, my physician did not think the MRI was necessary.  However, I decided to have one to be certain I was breast-cancer free.  To everyone’s surprise, the scan revealed three spots that biopsies confirmed to be multifocal breast cancer.  Since I knew my own body and had educated myself about available screenings, I may have saved my life because I was told a mammogram might have taken years to pick up the spots. This may not be the right course for every woman, but everyone should know that this tool exists.

I made the decision to undergo a double mastectomy and because it was caught early, I did not need chemotherapy or radiation.  However, I was prescribed Tamoxifen, which is a drug that can help prevent cancer from reoccurring. Like many medications, you must be careful about what other medications you are taking.  I discovered that the anti-depressant I was on counteracted the benefits of Tamoxifen.  Again, I acted as my own advocate.  Remember: Medications can save your life.  However, you must take them correctly and be very careful about what else you are taking, eating, or drinking in combination with your prescription.

Medical errors by physicians and hospitals are still prevalent and a staggering number of patients are misdiagnosed every year.  Compounding the problem is the fact that numerous prescriptions prescribed by various physicians are not being reviewed on a regular basis and patients self-medicate.

Patients should not just depend on a physician’s files of their medical information but take it upon themselves to create their own permanent medical records.  Before going into a medical appointment, everyone should be prepared with the following information:

• List of current medications and dosage
• List of ailments
• Medical history (if seeing a new physician)

A patient should also be prepared to explain to the doctor exactly what their problem is and offer an overall view of their health.  If a serious condition exists, perhaps they should bring someone else to the appointment.  In many cases a friend or loved one can interpret the information the doctor provides more objectively and be ready with questions that someone in an emotional state might have difficulty asking.

Ultimately, it is the responsibility of the individual to be their own advocate, know their own body, ask questions, and make sure everyone that is part of their healthcare “team” is communicating and basing decisions on the current, accurate medical information.

My envy stems from my irritation with myself for choosing a different path. I have spent most of my life telling people what they need to hear, hence often what they don’t want to hear. I try for balance, noting all the “good stuff”, then offering the counterbalance.  I find one unwelcome message can drown out all the affirmative messages. People home in on that “bad” stuff with an inerrant tenacity.

The differences between these two approaches are instructive.

Feeling good is quite popular. Creating the conditions for feeling good can lead to fame and fortune. We want to hear from these purveyors of endless good news and reassurance. There is all that amazing research on happiness, the blossoming theories and practices of appreciative inquiry, the neuroscience data on endorphins: you cannot ignore this compelling information.  The reassurance that one is right about everything can make for intense feelings of joy, hope, and optimism. The person who triggers the feelings is brilliant, constructive, right.

In contrast, mentioning the elephants in the room can lead to all manner of irritable behavior, judgments that are hard to absorb. I am too negative, a prig, a moralist, a mean person, a downer. I make people feel bad. Why do I have to bring all that stuff up?

It has taken me several decades to understand that wisdom lies in the middle ground, so I persist. It is in that spirit that I mention an important health care elephant.

• 27 to 30 percent of Medicare payments cover the cost of care for people in the last year of life.
• 40 percent of Medicare dollars cover care for people in the last month.
• 12 percent of Medicare spending covers people who are in the last two months.

We need to have a conversation pretty soon about longevity. Longer life spans are supposed to be the stuff of a success story, not a promise of immortality. We are going to die, eventually.

Exactly how long are we supposed to live, and how much money are we going to spend on dramatic efforts to extend the life of an elderly person for another month or week?  What are we going to do about all these studies that say that the lion’s share of health care costs occur in the last year of life?

How do we as a nation start a constructive discussion about death and how to let go of those we love without insisting that we spend a few large chunks of change on them while we struggle with their inevitable demise? How are we going to help families have this conversation without triggering the “death panel anxiety syndrome”?

Who will lead us in this effort? Theoretically, health care professionals would, however many are ill equipped to do so. They were educated to sustain life at any cost, literally. For many of them, success is not tied to a good death but the ability to not let death happen.  Their job is to save us. It is perhaps unrealistic to expect that they would be good at both warding off death and embracing it.

The antithesis of this worldview is found in the amazing work of the hospice community. They have been around for a while now. As someone who is willing to talk about death, I have had numerous conversations about hospice care, and have yet to hear a single person say this community’s work was anything but splendid. Quite a record, albeit anecdotal!

Maybe we need to make sure that their voice is heard more clearly in the health care “debate” about cost. Maybe we need to make sure experienced hospice workers are at every health care policy table. Maybe they have answers to our questions that would help us all grapple with death and dying a little more constructively.

They might even tell us what we want to hear.  More importantly, they might also tell us what we need to hear.

The Kreeger Museum’s Great Hall. Photo by Robert Lautman, 2004.

By Judy Greenberg. Conversations at The Kreeger Museum: A Program for People Living with Alzheimer’s Disease and their Caregivers

On behalf of The Kreeger Museum, I am thrilled to announce the development of a new art program especially designed for people living with Alzheimer’s Disease (AD), their families and caregivers.  Modeled after the pioneering Meet Me at MoMA (Museum of Modern Art, NYC) program (est. 2006), Conversations at The Kreeger Museum will similarly provide a forum for dialogue and connection through looking at art.  Docents and other arts specialists will conduct small interactive tours and discussions through the museum’s accessible galleries and grounds. During the program, tours will have exclusive access to the museum’s great architecture, sculpture, and paintings on one designated day per month.  The program will be free of charge to not only patients suffering from the disease but also to caregivers and family members who often face significant medical, emotional and economic challenges as a direct result of this devastating disease.  Initially the program will provide art tours only. In future years, it is hoped that Conversations will grow to include art making workshops, outdoor garden walks and intergenerational components.

The Kreeger Museum is uniquely equipped to create a positive and beneficial experience for AD patients and their caregivers.  The museum is a private, non-profit art museum located in what was formerly the private residence of David and Carmen Kreeger.  The Kreegers were passionate about art, music, and architecture and about how these endeavors enrich, enliven, and enhance the human experience.   In the early 1960’s, they asked Philip Johnson to design a home for them that could be easily converted to a museum upon their passing.  After Mr. Kreeger passed away in 1990, we officially opened as a museum in 1994.

The building’s timeless elegance reflects the architect’s passion for and knowledge of history and architectural styles from many great cultures and traditions.  It displays the Kreegers’ permanent collection of 19th and 20th Century paintings and sculpture.  The nearly 200 works in the collection include paintings by Monet, van Gogh, Picasso, Cézanne, Chagall, Rodin, Mirό, Moore, Kandinsky, Léger as well as very fine examples of African and Asian Art.  Through our numerous contemporary programs and exhibitions, work by leading current artists, like William Kentridge, Sam Gilliam, and William Christenberry, is also displayed.

Although we are still in the development phase of Conversations, we have already forged partnerships with leading local institutions and service providers (The National Institute on Aging, the National Coalition on Creative Aging, Sibley Hospital and Grand Oaks Assisted Living, IONA Senior Services, and others) to deliver a distinctly rich and beneficial program.  We hope to be fully operational and offering tours by November 2010.

Please stay tuned here for future announcements and if you would like more specific information about the program please contact, Derya Samadi, Program Manager at Conversations@kreegermuseum.org or 202 337-3050 ext. 18.

The Kreeger Museum is located at 2401 Foxhall Road, NW in Washington, DC.  If you would like to make a reservation for a tour please contact the Reservation Office by email VisitorServices@kreegermuseum.org or by phone (Monday through Friday from 10:00 am to 5:00 pm): 202-338-3552.  For more general information, please check our website at www.kreegermuseum.org.

I follow NIH funding because they have a leadership role in understanding and treating cardiovascular and neurological diseases. For example, NIH sponsored the recently-reported landmark CREST study comparing surgery to stenting for patients with carotid artery disease related to stroke, conducted in 117 centers over 9 years.

NIH also sponsored historic research on the clot-buster tPA treatment that reduces morbidity and mortality in acute stroke patients when initiated within three hours of onset.  Stroke is the third leading cause of death and the leading cause of disability in adults. So, I assumed that a lot of privately-supported research was underway.

I was shocked and dismayed to hear Story Landis, Ph.D, Director of NIH’s National Institute of Neurological Disorders and Stroke (NINDS), tell the American Heart Association’s lobby-day lunch attendees that pharmaceutical and biotech companies are abandoning research into acute stroke and neuroprotective drugs that could extend the window for tPA treatment beyond three hours.

This means that NIH will be left to develop new treatments. Unfortunately, only 1% of the federal NIH budget goes to stroke.  President Obama’s proposed 2011 budget for NIH is $32 billion. I’m advocating for the American Heart Association/American Stroke Association’s recommendation that Congress appropriate $35 billion for NIH, so more grants can be made for stroke research.

My husband, Paul Berger, had a stroke 20 years ago at age 36.  Paul wouldn’t have qualified for tPA even if it was available back then because his stroke was the result of a ruptured aneurysm dumping blood in his brain, instead of a clot (80% of strokes are caused by clots).  I am very  encouraged to see NINDS support research into other treatments for the acute phase as well as post-stroke rehabilitation.

May is National Stroke Awareness Month. You can find information on stroke warning signs and risks posted to the NINDS website: http://stroke.nih.gov/ .

Even with emergency medical treatment, many stroke survivors will require rehabilitation and suffer chronic health problems—weakness or paralysis in arms and legs, difficulty with speech/language, and problems with everyday living skills.

Strokes affect people of all ages, including younger people who may lose their jobs due to stroke-related disabilities. The sudden, life-changing nature of a stroke impacts the survivor’s spouse and family as well.

To help make everyday better, my husband and I have written 3 new E-Books on stroke recovery just launched by Positive Power Publishing and  StrokeSurvivor.com:  (1) “Conquering Aphasia & Stroke TODAY!”; (2) “Conquering Aphasia & Stroke for Caregivers”; and (3) “Articles to Take With You.”  Excerpts and details are posted at: http://www.strokesurvivor.com/e-books.html.

As the late Senator Kennedy’s career on Capitol Hill demonstrated, change is usually incremental, usually negotiated and usually compromised. But at the end of the day, change usually amounts to progress.

I see tremendous progress, too, as I look back on a decade’s worth of work to promote access to affordable quality health care using nurse practitioners in the role as primary care providers, thereby alleviating the burden on a strained primary care system.

We’ve come a long way regionally and nationally. The fact that we as a country are always striving to improve our path is what most invigorates me as a relatively new American. Our pursuit of progress is never ending, but it is what sets us apart from most countries in the world. We know our work is never done. As we enter a new year and decade, we always should remember that what makes us different from most people and countries in the world is that we have the freedom to purse progress and make change.

This health insurance reform bill is not the end all or be all, but it will help make affordable health insurance available to more than 30 million Americans who have been without it. Furthermore, the legislation contains many provisions for others who fall through the cracks and will need additional care and support.

That’s progress for individuals, families and America, as Walt Disney would have said. And not until you take a ride on the Magic Kingdom’s The Wheel of Progress will you truly appreciate how important it can be to take even a small step in the right direction.

Happy New Year! And a toast to a New Decade and our new Pursuits of Progress for individuals, families, and our country.