At the Forum and on the Hill – A Voice for Parkinson’s

site-header2Last week I met some amazing people, listened to presentations that really had my attention, and learned first-hand about advocating to legislative representatives. I was impressed by how well organized this event was; even more so when you consider how few staff members this organization has. This was my first Parkinson’s Action Network (PAN) forum and I was there to gain a different perspective on patient advocacy for people living with Parkinson’s disease. Previous Parkinson’s conferences I’ve attended were local, and focused on educating people about Parkinson’s as well as some of the medical treatments and local services available to them. This conference was different in that it’s national, but also in that the discussion on medical treatments and technologies went beyond educating us on the basics. We learned of some of the difficulties that are experienced making them available to people living with Parkinson’s and we were encouraged to help speed up the process.

At the Forum

On the first day, after a warm-up by Charlie Cook of the Cook Political Report on the political climate here in Washington, D.C. and his insight on the candidates for the 2016 presidential election, we learned about new technologies:

  • Fox Insight (www.FoxInsight.org), an online study to gather data about patient experiences, both medical and daily living – from the Michael J Fox Foundation
  • developing technologies to improve patient / doctor communications – from Great Lakes Neurotechnologies
  • DaTscan, a new imaging tool for earlier diagnosis – from GE Healthcare
  • issues patients deal with when trying to access new and innovative treatments

I was impressed by how the Michael J Fox Foundation (Fox Insight) study was open to everyone, not just people living with PD, and how it covers life with Parkinson’s not just medical data. On the other hand, I was so very frustrated at the difficulties patients experience in gaining access to necessary medications, particularly the newer ones. Too often patients have to advocate for themselves by being forced to appeal when they are refused access to medications by their health insurance company, or by finding programs and grants to help pay for them. While we can do a lot to stay healthy through our lifestyle choices, I believe we have the right to appropriate medical care when we need it.

On the second day, the presentations were geared toward preparing us for our day on Capitol Hill when we would ask our legislators for their support. We learned why we were asking for members of the House and Senate to:

  • Co-sponsor the Advancing Research for Neurological Disease Act of 2015 (H.R. 292, S. 849)
    Do you know how many people have Parkinson’s? The estimate is between half a million and a million and a half. That’s a pretty big difference, and it’s quite possible that there may be more. This Act will enable the Centers for Disease Control (CDC) to collect the data (much of it already exists) and evaluate it. It can then be used to provide research, treatment, programs and services. Although we were advocating for assistance on behalf of the Parkinson’s community, this act covers other neurological disease such as Alzheimer’s and Multiple Sclerosis. Advocates from the Alzheimer’s Association were also there the same day we were at the Capitol.
  • Reinstate or provide additional funding for:
    ◦ the Department of Defense Parkinson’s research (NETPR) program to identify how Parkinson’s develops and research how to diagnose, prevent and treat it.
    ◦ NIH to facilitate research into Parkinson’s treatments and cures
    ◦ FDA to speed-up the process of approving prescription drugs and make them available to patients sooner rather than later.
  • Join the Congressional Caucus on Parkinson’s disease

We worked in teams with others from our state, and appointments with our House and Senate representatives were arranged for us by PAN staff. In our folders we had information about the representatives, the staff person we would be meeting with and information on the various requests to help us speak knowledgably about them. Our Virginia team was fortunate to include veteran PAN advocates, Karl and Angela Robb, so they could guide us newbies in the planning and process. We decided that each of us would speak to a particular request based on our experiences and reasons for being there. I felt most comfortable speaking about H.R. 292 because I feel that if we know where people living with Parkinson’s are, we could reach out to them and connect them with relevant programs and services.

On the Hill

HillTeam2015On the third day, we were transported to Capitol Hill from our D.C. hotel. The timetable for the buses was coordinated with our appointment schedules. It was a long day, but productive, and we met with staff from the offices of our two U.S Senators as well as three U.S. House Representatives. We began each meeting by explaining that we were speaking for our friends living with Parkinson’s who weren’t able to be there that day. Then each of the six people on our team introduced ourselves, spoke about our particular issue and made our request for support. In response, we were advised about where our Representative stood on the matter, questions were asked and sometimes more information was requested. We took notes so that PAN staff could follow-up. We also exchanged business cards so we could follow-up individually by email, and where possible, had our photo taken with the person we spoke to so we could post it on social media. The power of images!

My thanks go out to the staff at PAN (in particular Hayley and Jennifer!) for organizing this informative and inspiring event, and congratulations on a job well done!

Patients are people, too!
I’m curious to see what happens as a result of our advocacy. I’ve never done this sort of thing before – met with or written to a politician to make a request – and I was surprised at how easy it was. I’ve been assured that the more they hear from us, the better chance we have of getting and keeping our representatives’ attention so they will take action. If you’d like to give it a try, you can find out more about the Parkinson’s Action Network and the issues they are working on through their website, http://parkinsonsaction.org.

I realize that not everyone shares my interest in Parkinson’s, but after reading this article about what we learned and did, I hope that you’ll be inspired to find out how you can take action for a cause that is important to you. For instance, if your interest is in Alzheimer’s disease, you can find information about their advocacy forum here: http://www.alz.org/forum/overview.asp.

Speak up! The more our politicians hear from us, the better chance we have of being heard. Excuse me . . . I have some follow-up letters to write!

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My Favorite Champion

11102777_10153169286227298_4804578068459501625_nIt’s not every day that I can share the exciting news that someone I know is being honored by the White House, but on March 23, 2015, nine men and women were recognized as Champions of Change for Parkinson’s disease. Among them was my friend, Angela Robb, whose morning in the White House spotlight was in recognition of her efforts as an advocate for care partners.

One of the first things I learned when I became involved with my local Parkinson’s organization was to not refer to people as Parkinson patients because Parkinson’s is only a part of who they are. Instead we say that someone lives with the disease. Angela’s husband Karl lives with Parkinson’s disease but the reality is that they both do, and they will tell you that they are care partners for each other. Karl was aware of Parkinson’s symptoms at 17 but it took 6 years and 9 doctors for him to receive a diagnosis at 23. They met several years after his diagnosis and have been married for 19 years.

Both Angela and Karl are well-known nationally in the Parkinson’s community for their advocacy work. They help people living with Parkinson’s to connect with each other and share their ideas on how to live well with the disease. They also educate the public and government about Parkinson’s; for instance, the need for more research and ultimately a cure. Their involvement ranges from co-leaders for a local support group to being on the board of national Parkinson’s organizations such as the Parkinson’s Action Network. I’ve really only touched on a fraction of what they do.

Anyone who spends time with Angela and Karl will come away feeling upbeat and happy which may sound strange given that they are living with a chronic, progressive disease, but being positive and laughing a lot helps them to live well with it despite its unpredictable nature. They both inspire us all to live our best lives with joy, and compassion for others. Congratulations Angela (and Karl!) for this great honor. I know you’ve said how humbled you are by it as well as the people who were honored alongside you, but it is truly well-deserved.

Here’s a YouTube link to the Champions of Change for Parkinson’s disease event.

Information about all the Champions of Change for Parkinson’s that were recognized can be found here on the Parkinson’s Action Network website.

Patients are People, too!
In the Parkinson’s community, there’s a lot of emphasis on medical treatments and research in order to live better with the disease, but there’s more to life and good health than medicine can provide. The Robbs show us how by example and in their advocacy, and you can read about how they do it on Karl’s website, A Soft Voice in a Noisy World: Dealing and Healing with Parkinson’s Disease. He’s written a book by the same name.

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What does health mean to you?

I’ve often said that everyone has their own definition of fitness. For some it’s about being able to run a marathon and for others, it’s simply being able to stand up from a chair. Everyone has their own definition of health, too. For some it’s about being in the correct numbers zone at the doctor’s office, for others it’s about how they feel and what they do with their lives.

In her article, Healthy in a Falling Apart Sort of Way, Jane Brody writes about health from a medical perspective. She describes her personal medical conditions, past and present, and also describes the things she does to stay active. She goes on to describe how our definition of health has changed over the years, and how these days it might be determined by how well we can live independently and participate in society even with a chronic illness or disability.

In managing our various ailments, and in hoping to avoid additional ones, we’ve medicalized our health care, often to our own detriment. Ms Brody refers to LessMedicine Dr. Gilbert Welch (author of Overdiagnosed: Making People Sick in the Pursuit of Health) and his new book Less Medicine, More Health: 7 Assumptions That Drive Too Much Medical Care. We assume certain things are true, such as it’s better to fix a condition than to manage it, and that it’s better to find something before the symptoms appear so we can deal with it, but the follow-on from much of this fixing and finding can do us more harm, turning “people into patients”. One of the comments about this article suggests that treatment to fix a condition often isn’t as effective as we hope because it doesn’t address the underlying cause and therefore more problems can occur.

In Bigger Picture, author Frank Forencich looks at the definition of health in a slightly different way when he asks, “Is there more to life than health?” I love this question! It speaks to the heart of why I call this blog Patients Are People, Too. Consider how much time people spend on making sure they’re eating right and getting lots of exercise (the right kind, of course!) as well as the countless hours spent at medical appointments in an effort to stay healthy. In the last paragraph Frank writes, “At some point we need to give our obsession a rest and move on to larger meanings. Everyone knows that exercise and a good diet will make us stronger; it’s what we do with that strength that counts.” Well said.

Patients Are People, Too!
I wonder sometimes if the stress of worrying about our health and staying healthy isn’t doing more harm than good. Isn’t it about time that we get back to living our lives and enjoying what we do with the people we care about?

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About Unretirement

In the Money section of the March 1, 2015 issue of the Washington Post, you’ll find an interesting interview with Chris Farrell, author of Unretirement, How Baby Boomers are Changing the Way We Think About Work, Community, and the Good Life. He makes some great points about why baby boomers may not have the savings to retire, and even if they did, they may not want to because they are thinking more along the lines of spending the next period of their life doing something that has meaning to them.

Compared to many jobs in the middle of the last century that were hard on the body, today more jobs are easier, and people can use their education, skills and experience to continue working. In answer to concerns that older workers would take away jobs from younger workers, he reminds us of similar concerns back when women joined the work force. However, instead of women taking jobs away from men, more jobs were created. Now, as older workers are creating new companies, jobs are being created for younger workers. Older workers won’t necessarily stay stuck in their cubicle for another twenty or thirty years – they’re more likely to take their knowledge and skills to work or do business in a different way.

At the end of the interview, Mr. Farrell makes the point that we should move past the stereotypes about older workers not being productive or contributing to the economy.

“When you start looking at the arts you find a lot of people get more creative as they age. Then you look at the law. Then at doctors. And then you start looking at management, at skilled craft people.

All of a sudden you start looking throughout the economy and you see there are a lot of really productive, creative people who are seniors. We need to break down this stereotype.”

Patients Are People, Too!
Baby Boomers are changing the definition of retirement. Have you thought about how you want to spend the next part of your life? What has meaning to you?

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It’s still a good idea – more about hospice

A geriatrician holds the hand of an elderly woman with arthritis.How often have you said, “I wish I’d known that!” especially when it comes to your health or lifestyle choices? I’ve heard it many times, and said it a few times myself, so I hope that the information I’m presenting to you here in this blog will spare you a few “I wish I’d known that!” comments.

After reading The Business of Dying, the recent series of articles in the Washington Post about hospice care in America, I got to thinking about how the authors focused on the negatives which in some ways is good, but it left me wondering how, apart from using the guide they provided, someone figures out which hospice is best for them. I wanted to know more about hospice and I had questions, so I asked a friend who has worked for a couple of hospice companies, one for-profit and one not-for-profit, if he could help me. Here are some of the things I learned.

In order to qualify for hospice, two doctors have to agree that the patient is terminally ill with six months or less to live if their illness runs the expected course. They would take into consideration whether the patient was losing weight unintentionally, changes in mental health including cognition, and how often the patient had been admitted to hospital in recent months.

The rate that Medicare pays for hospice varies according to location and is related to the cost of living for that area. The Washington Post article, Hospice firms draining billions from Medicare  states that “Medicare pays a hospice about $150 a day per patient for routine care, regardless of whether the company sends a nurse or any other worker out on that day.” If you only take into consideration the time hospice workers spend with a patient and family, then this can sound like a huge rip-off. It’s only fair to the hospice companies that we consider their additional costs such as:
• overall administration and management for each case
• the team that is supporting the patient and family, their wages and expenses (some of whom visit the patient, and others who support them by phone. The team would most likely include the physician, RN case manager, home health aide, chaplain, and social worker, all of whom should be meeting with the patient and family initially, as well as various times throughout the period of care.
• Durable medical equipment such as hospital beds, and mobility devices (walkers, wheelchairs), and other supplies and equipment that can help the patient to be more comfortable might also be provided depending on each individual’s care plan.
•  Prescriptions that are related to the hospice diagnosis as well as those that are prescribed to relieve pain and manage symptoms.

In the Washington Post article Terminal neglect? How some hospices decline to treat the dying  the terms “continuous care” or “crisis care” were used. I was confused about the definition of these terms as were other people I spoke to. The explanation is that it is nursing care, provided for short periods of time for flare-ups or crises, with a minimum of 8 hours of care by a skilled Registered Nurse (RN). It can be part of hospice care but would not be provided the entire time and may not be required at all.

I also wanted a better understanding of what palliative care is because it is so often confused with hospice care. They are not the same thing – they are two separate kinds of care.
• Palliative care provides relief for pain and uncontrolled symptoms and can be provided at any stage of an illness whether the patient is receiving treatment because a cure is likely or in hospice. While receiving palliative care, it does not necessarily mean that the patient will also receive hospice care. Palliative care is covered by Medicare part B.
• A patient in hospice care will most likely receive palliative care (pain relief) as part of their care plan. Hospice care is covered by Medicare part A.
In both palliative and hospice care, a team of medical professionals may work with the patient and family.

When working on your Advance Directive, you might include your thoughts on palliative and hospice care. What appeals to me about both concepts is that you have a team caring for you that is taking into consideration not only your physical comfort, but also your emotional and spiritual needs.

Patients are people, too!
It’s easy to get caught up in only one perspective be it good or bad, positive or negative. If you don’t feel that you’ve fully understood something that you’ve been told or that you’ve read . . .  Keep researching and asking questions!

• The Centers for Medicare & Medicaid Services provides an official government booklet – Medicare Hospice Benefits
• Durable medical equipment covered by Medicare – www.medicare.gov/coverage/durable-medical-equipment-coverage.html
** Although Medicare covers this equipment, it doesn’t mean that everyone will receive it. What a patient receives must be medically justified and included in their “custom plan of care.”
• What Medicare Covers – www.medicare.gov/what-medicare-covers/index.html

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It started off as a good idea

The concept of hospice, to care for a terminally ill people, has been around since the 11th century and hospice as we know it today, is still very much the same. When a patient’s prognosis is terminal, palliative (rather than curative) care is provided to relieve the patient’s suffering either in an inpatient facility or in the patient’s home. Support for emotional and spiritual needs is also provided not only for the patient but for their caregivers and loved ones as well. Hospice care, when provided with compassion, can help patients and their families through a difficult and traumatic time in their lives.  Unfortunately, for many hospices (but not all) the focus is on growing a business and profits rather than providing quality care, and many people are being hurt.

The Business of Dying: Patients in Peril is a series of articles published in the Washington Post covering the hospice industry. In their investigations, authors Peter Whoriskey and Dan Keating, analyzed Medicare billing records and reviewed patient complaint records revealing the quality of care that patients in hospice are receiving.  People when they are most vulnerable are being taken advantage of so that businesses can provide a profit for their investors.

Some of the issues they bring to light:

  • Care that is promised and not provided
  • Lack of oversight for the industry
  • Differences between for-profit and nonprofit, older and newer, and smaller and larger hospices
  • Lack of experienced personnel
  • The high rate of patients opting out of service or being discharged by the company
  • Even though they’re not dying, patients are being enrolled for hospice care
  • Medicare pays a flat-rate, daily fee for each patient regardless of the level of care provided

Part 5, Quality of U.S. hospices varies, patients left in dark, discloses how “evidence-based data about hospices is simply not available” and that “The absence of information forces families to speculate and hope for the best — to roll the dice — when choosing medical care for a loved one facing death. It also allows hospices that offer poor service to escape detection, while the care at better hospices goes unrecognized.”

In order to make a more informed decision should we need hospice care, as part of this series a Consumer Guide to Hospice based on Medicare data has been made available. They also suggest the National Hospice and Palliative Care Organization’s guide.

Patients are people, too!
My understanding of the original intention of hospice is that it allows a patient to be a person again; to decide how one wants to live and die, while receiving compassionate care. It saddens me that a concept with such honorable intentions has been turned into a business that we now need to protect ourselves from. I hope you’ll make use of the articles and consumer guides mentioned above to educate yourself and ensure that, should you need it, you can get the care that this concept promises from the companies that put people above profit.

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We need to talk

The Business of Dying: Patients in Peril is a series of articles published by the Washington Post this year. Most the articles have been about hospice care and the quality of care they provide, but in Part 6, the title was ‘Warehouses for the dying’: Are we prolonging life or prolonging death? The authors bring to our attention how patients in ICU’s and the medical staff who care for them suffer from “the overuse of aggressive end-of-life care”.

Most of us, when asked how we picture our passing, will say that we hope we’ll just go to sleep one day and not wake up. Unfortunately the currently reality is that too many people will spend their final days in the hospital, hooked up to machines and alone.

Because of communication breakdowns at various points along the way, when patients are unable to express their wishes for how they’d like to be treated and what a meaningful recovery means to them, they are at the mercy of well-meaning but misinformed family who speak for them. Family members ask the doctors to “do everything” without really understanding what that means or how it will impact the patient. What it can mean is aggressive, painful treatment that can cause intense suffering for the patient who is unable to let anyone know how they’re feeling. In articles I’ve read on this subject, doctors give the example of how families don’t understand how damaging to the body CPR can be because their only reference is what they see in the movies with patients waking up and walking away unharmed. The reality is that broken ribs and internal bleeding are common, particularly in the elderly, resulting in more pain and further issues to recover from.

The Washington Post article as well as this Canadian article, Doctors and nurses working with critically ill patients suffer moral distress, research finds both describe how upsetting it is for doctors and nurses to have to provide aggressive treatment that prolongs the patient’s time in the ICU when there is no hope for recovery.

Family members speaking on behalf of the patient need the doctors to help them make informed choices. However, doctors aren’t paid to take the time to have long discussions with families (although the AMA has submitted a request to Medicare to cover end-of-life conversations, and some health insurance companies are beginning to reimburse doctors, as discussed in an August 30, 2014 article in the NY Times, Coverage for End-of-Life Talks Gaining Ground). When the patient is in crisis, there may not be time to fully explain all the options so that there is a true understanding of the full outcome. Canadian researchers have learned that doctors frequently give false hope and many patients are not even told that they are dying, resulting in aggressive treatment despite the likely outcome (see Windsor Star article).

For the sake of the patient, the family needs to know the truth, even if it’s not what they want to hear. If the family knew how much their loved one would suffer when doctors “do everything possible”, at their request, they might agree to minimal care. Helping the patient to be comfortable and pain-free, in pleasant home-like surroundings, will help them die peacefully and will also be less stressful for the patient, family and medical staff.

It’s thanks to modern medicine and technology that we’re able to prolong life and people can recover from serious illness and injuries to go on to live a life that has meaning to them. Unfortunately it also leaves us with the predicament of having to decide for people we love whether they live or die. Because many of us have to make these decisions, it’s more important than ever to make clear our own personal definition of living, keeping in mind that this definition can change over time as our circumstances change. When you witness a loved one on life support it may change your perspective on the treatment you want for yourself.

Patients are people, too!
We should talk about our wishes before a health crisis occurs. The Conversation Project is one website where you can get more information about how to talk about the end-of-life care that you want.

I hope you’ll work on your own Advance Directive, if you haven’t done so already. There’s lots of information on the internet to work with, such as this website, As You Wish (mentioned in the Washington Post article) and National Healthcare Decisions Day.

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