The following is a guest post by Jessie C. Gruman, PhD who is the president and founder of the non-profit organization Center for Advancing Health. It was originally posted on the Prepared Patient Forum blog on January 11th.

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? (more…)

By Glenna Crooks. I came of age in the “Keep on Truckin” era and like many boomers, intend to do so for decades to come. I like my independence (!) and my own desires pale by comparison to my Mom’s – who’s into her 80’s and still running circles around me.

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.

By Stephanie Mensh. We probably don’t need a new report to tell us this: middle class people cannot afford the cost of nursing home services or long term home health care services.    The AARP, Commonwealth Fund, and SCAN Foundation joined  forces to examine state-by-state affordability,  accessibility, choice, quality, and–interestingly–support  for family caregivers, in their first-ever “State Scorecard  on Long-Term Services and Supports for Older Adults, People  with Physical Disabilities, and Family Caregivers,”  just published earlier this month.

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. (more…)

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 Home Care Assistance. She holds a Doctorate in Psychology from the Illinois Institute of Technology.  Kathy co-authored the book, Happy to 102: The Best Kept Secrets to a Long and Happy Life, based on the ground breaking Okinawa Centenarian Study, which spells out precisely what it takes to delay or escape Alzheimer’s and other chronic diseases, as well as how to slow the aging process.

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 (more…)

By Jane Sarasohn-Kahn. By 2050, the demand for long-term care (LTC) workers will more than double in the developed world, from Norway and New Zealand to Japan and the U.S. Aging populations with growing incidence of disabilities, looser family ties, and more women in the labor force are driving this reality. This is a multi-dimensional problem which requires looking beyond the issue of the simple aging demographic.

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. (more…)

In 1997, Sona Mehring, founder and CEO of CaringBridge, started the site to help her friends who, in the midst of a health crisis, needed a way to keep everyone informed about what was happening. Since then 42 million people have connected to someone using CaringBridge.

Watch Video

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. 

By Stephanie Mensh. Watching the progress of Rep. Gabrielle Giffords brings back memories. My husband Paul Berger was a few years younger than Giffords when he had a massive stroke from a ruptured, bleeding aneurysm on the left side of his brain, leaving him severely disabled.

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.

By Diana J. Mason, PhD, RN. I was quite distressed to read in this morning’s news that the Obama Administration had reversed the new Medicare regulation that would pay for periodic conversations between physicians and patients about preferences for end-of-life care.  According to today’s New York Times, Speaker John Boehner said that  “the provision could be a step ‘down a treacherous path toward government-encouraged euthanasia.’”

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.

Take a few minutes and view this video featuring Disruptive Women Regina Holliday: Remember Your Hollidays – A Message for Caregivers . We promise it is well worth your time!

By Stephanie Mensh.  My husband Paul Berger and I had only been married for 4 years when he had his stroke at age 36. I’ve been a caregiver for over 20 years now. Looking back, there have been many innovations in our health care system that have made overcoming stroke and chronic disabilities a little easier and our lives better. And, there are some that have made things harder, too. 

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. (more…)

By Diana J. Mason. The Institute of Medicine’s (IOM) report on the Future of Nursing released on October 5^th at the National Press Club was developed by an interdisciplinary committee after public hearings around the country and an exhaustive review of the literature on various related themes, such as the evidence on the outcomes of nursing care. Physicians Harvey Fineberg (President of the IOM) and Risa Lavizzo-Mourey (President of the Robert Wood Johnson Foundation) spoke to the importance of the report for improving health and health care in the United States. Risa specifically pointed out that the report was not so much about nursing as it was about how to transform health care. Additionally, committee member and physician Jack Rowe (former head of Aetna) spoke eloquently to the importance of ending interprofessional turf battles by focusing on what patients need.

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.

By Phyllis Kritek. As a registered nurse, I feel great pride in my profession. The list of reasons is long. One factor enjoys external validation, nurses have topped Gallup’s Honesty and Ethics ranking of different occupational groups every year but one since they were added in 1999. The exception is 2001, when firefighters were included on the list on a one-time basis, shortly after the September 11th terrorist attacks. I consider it an understandable outlier.  Apparently citizens think we are ethical and honest.

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. (more…)

By Grace Bender. Everyone needs to be their own healthcare advocate.  I realized this when I noticed my mother struggling to manage the numerous medications she was taking. With so many prescriptions and over-the counter medications to keep track of, I was concerned about her taking the correct dosages at the correct times and following all the various instructions.

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. (more…)