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Pumping up the volume on patient voices | Health Council of Canada

Originally posted on the Health Council of Canada Blog.

Patient Commando Executive Director Zal Press writes a guest column for the Health Council of Canada blog as part of the release of the Health Council of Canada report  “How do Sicker Canadians with Chronic Disease Rate the Health Care System? ” Get the report here and watch their patient story video – a familiar face included.

 

I’m taking a biologic for Crohn’s disease. And I’m a lucky guy – my $30,000 annual tab is picked up by my wife’s benefit plan. But in five years, when I hit 65, we’ll be off her plan and I’ll be transferred to the Ontario Drug Benefit Plan.

I’m already fretting over what that future will bring. Will the continued financial strain on the health system foreclose on my access to this medication, and instead force a body-altering operation because it will cost the system less in the short run?

And will this decision be made by a cost-benefit analyst rather than by a collaborative agreement between me and my doctors?

US insurance companies have required multiple step therapies before approving many biologics, resulting in multi-year delays. In Ontario, the Exceptional Access Program has fallen behind in processing applications. The population percentage with chronic illness is growing and treatment of choice for managing many conditions is increasingly these pricey biologics.

After living with a chronic illness for over 30 years, I understand it’s important for patients to be active participants in our health care. But I also know that outside of the examination room, the patient’s voice is still faint and needs amplification as the discourse necessary over preserving access to treatment starts to gain momentum.

Our southern neighbour offers insights into the problem of access. Is the US experience just the tip of the iceberg of a dangerous Canadian trend? We can learn from that as we debate the broader issue of sustainability. In the meantime, I’ll take comfort from the security of my marriage – and my wife’s plan.

An open letter to Michael J. Fox

Dear Michael J. Fox,

Your Curb Your Enthusiasm appearances powerfully highlight the challenges and misconceptions those with chronic conditions face on a daily basis.

You’ve shown how one person’s story can make an impact and you have said that we’re given so few chances in this lifetime to make a real difference and change the world.

As you read this letter, millions of people around the world join with you in reading it as well…adding their memorable stories online and sharing with you their experience, living with chronic illness. All of these people are trying to make a difference.

I am asking you to share a simple story with Patient Commando. Maybe one that you might think is insignificant to others, but demonstrates nevertheless, how gritty it gets behind the hospital curtains along with the compliment of hilarity that sometimes is coupled with that experience. The more it is about thoughts and feelings, anxiety or relief, the better.

Together we can amplify the voices of those labelled with chronic condition and overcome what author Chimamanda Adichie coined as “the danger of a single story”: the idea that there’s only one way to tell a story and understand it.

You’ll find people similar to yourself, going online at www.patientcommando.com and sharing their story whether in prose, video, poetry, song, or photo.

Our collection of stories from around the world includes those with international profile like tennis star Serena Williams revealing her struggle with Sjogrens syndrome, the incurable condition that forced her to drop out of the US Open; the late Kenneth Schwartz, lost to cancer at 41, whose legacy to patients is the renowned Schwartz Center for Compassionate Healthcare; and the unknown like Ami Ankilewitz, a 34 year old with Muscular Dystrophy who is a lightweight at only 39 lbs but a heavyweight on the meaning of life.

Yet we are not actively looking for heroes, just real tales revealing the lives behind the doors of extraordinary challenge, the simplicity of human kindness, the emotional game of leapfrog to an acceptance of chronic illness.

By sharing a story with us, you’ll be encouraging millions of others to champion their own experience. By adding their collective voice to yours, they’ll be making a real difference, one story at a time.

Sincerely yours,

Zal Press Executive Director

Patient feedback provides focal point for future of care at KGH

It cannot be denied that Kingston General Hospital has received some less-than-favourable feedback over the years. Now, hospital officials are looking to connect with the public in order to better understand the needs of patients and ultimately implement programs and practices that will be as effective as possible.

On the evening of Nov. 10, KGH held a public event called Patients Know Best, which saw members from the hospital’s Patient Advisory Council, formed in February of 2010, speak about their own experiences at the hospital and how they are helping to shape the future of care delivered there.

“Input from patients is critical to how we make improvements in hospital settings and for the whole experience of patients,” said KGH Vice President for Clinical Administration and Professional Practice and Chief Nursing Officer Eleanor Rivoire.

Advisor Lidia Dorosz gave a heart-felt account of what it was like to witness her mother be neglected, often to the point of abuse, by nursing staff at the hospital as she lived her final days.

“I am a council member because I want to make a difference,” she said. “I want to hold people accountable…it’s time that we (are able) to feel safe about going to KGH.”

Overall, Dorosz said that she hopes sharing her story and participating on the patient advisory committee will give others the courage to speak up when they see a problem, and fight the battle that needs to be fought for better care.

“We want to be a sobering reminder to every health care professional that we demand respect and dignity and we demand to be a part of the partnership,” she said. “(What happened to my mother) is not to happen again. That’s what this is about.”

Advisor and former patient Jennifer Dee agreed, saying that for her it’s all about putting some humanity back into the hospital system.

“I would like to be a partner,” she said. “I’m tired of someone treating me like a widget, a piece of meat, a number.”

“I’m the person that reminds the staff that we all put our pants on one leg at a time,” added advisor Doug Davey.

He remarked that he has in fact had many great experiences at KGH, and would like to use those along with the not-so-great experiences, as well as advice and ideas from similar committees in other cities to guide the process.

Advisor Glenn Outhwaite has also spent a lot of time in the hospital over the years, resulting in both negative and positive experiences.

“I wanted to see change occur and I wanted to be involved in making the environment much more user-friendly and to see where patients and family members could actually become part of the decision-making process,” he said.

Outhwaite remarked that while there is still a long way to go, the change the committee has affected so far has been remarkable to see. Already, it has been an important voice on current hospital changes and issues, such as the menus that are being considered by the new food service.

“We were able to give them significant input as to how (the menus) need to change,” he said. “The feedback I heard was how delighted (hospital officials) were that they had come to us…and that’s really positive reinforcement for the things that we’re doing.”

“Each and every one of you has taught us so much and the experience of being in this forum is such a reflection of the growth that we’re experiencing,” said KGH CEO Leslee Thompson to the advisory committee members.

She said that it has been difficult to hear stories like Dorosz’s, as she is confident hospital staff make an honest effort every day to do the best they possibly can.

“But we know there are things in the way (of) the system (that) contribute to a lot of barriers and annoyances and sometimes bad things do happen,” Thompson said. “So we thought we would focus very much on a future that centres around hearing what people want: outstanding care always, every second of every day.”

The hospital also recently launched a website, KGH Connect, as a way to enhance communication with the community and help the public stay informed about what’s going on at the hospital. For more information, or to learn how you can get involved, please visit www.kghconnect.ca.

We Listen. We Care. | Compassion & Choices

Leaders in the care of patients who face serious and life-limiting illness have designated November as National Hospice and Palliative Care Month, prompting more stories about both options. The Milwaukee Journal Sentinel gives a very good overview of palliative care and hospice in this Q&A with Dr. Diane Meier. The theme of this year’s observance is “We Listen. We Care.”

Listening is the No. 1 objective of our End-of-Life Consultation team (EOLC). Do you or someone you know face a serious illness? Do you have questions about palliative care or hospice? A Compassion & Choicesrepresentative will gladly answer any questions you or your loved ones have about what these options mean and how each can improve quality of life. Anyone can access an EOLC counselor at no cost by calling 800-247-7421.

Caring about the patient, especially at the end of life, is a key objective of our educational and advocacy efforts. Our goal is to change the focus of medical providers to the patient rather than the patient’s illness. This is the core of our principles for patient-centered care. As individuals face the end of life and try to navigate the health care system, their own values and choices should be paramount. Our seven principles — focus, self-determination, autonomy, personal beliefs, informed consent, balance and notice — are designed to guide health care providers and policymakers to place patients’ values at the center of end-of-life care.

End-of-life care should focus on the patient’s life and current experience. Too often death is seen as a failure of treatment, not a natural event. During this time, having choices can relieve hopelessness. The seven principles guide providers in putting the patient first:

1. Focus. End-of-life care should focus on the patient’s life and current experience.

2. Self-determination. Individuals vary in their tolerance for pain and suffering.

3. Autonomy. Decisions about end-of-life care begin and end with the autonomous patient.

4. Personal Beliefs. Patients should feel empowered to make decisions based on their own deeply held values and beliefs, without fear of moral condemnation or political interference.

5. Informed Consent. Patients must have comprehensive, candid information in order to make valid decisions and give informed consent.

6. Balance. Patients should feel empowered to make decisions based on their own assessment of the balance between quantity and quality of life.

7. Notice. Patients must have early, forthright and complete notice of health care providers’ institutional or personal policies or beliefs that could impact their treatment wishes at the end of life.

Some physicians are reluctant to make a hospice referral if they believe there is a chance a patient’s disease can be still be treated. This typically occurs when oncologists are very invested in the “battle” against cancer. Remember your wishes and values are what matter most when determining whether to forgo further treatment that targets the disease.

The fifth principle, informed consent, requires that physicians give patients full and honest information about the pros and cons of all treatment options, both those directed at the patient’s illness and others for pain and symptom management. Compassion & Choices works for public policies to push the reality of medical practice closer to that principle, as I will discuss in a later post.

If you have an incurable and progressive disease and have not discussed hospice with your physician, we suggest you do so. While you may not need such assistance now, understanding how to enroll in hospice can be helpful and alerts your physician to your end-of-life wishes.

If your doctor is reluctant to refer you to hospice in a timely manner, many hospices provide a free in-home evaluation to determine whether your medical condition merits hospice care. If the hospice providers agree that you are eligible for their services, the hospice physician will contact your primary-care physician to obtain your medical history and transfer your care to the hospice professionals. You or a person you designate can contact any hospice in your community to arrange for this assessment.

Our EOLC team can facilitate the process, help with advance-care planning or advocate for effective pain management. “We Listen. We Care.” At Compassion & Choices we rededicate ourselves this November to those principles, which form the very core of our mission.

Authored by Barbara Coombs Lee Originally posted on Huffington Post.

Barbara Coombs Lee is President of Compassion & Choices, a nonprofit organization dedicated to expanding and protecting the rights nof the terminally ill. She practiced as a nurse and physician assistant for 25 years before beginning a career in law and health policy. Since then she has devoted her professional life to individual choice and empowerment in health care. As a private attorney, as counsel to the Oregon State Senate, as a managed care executive and finally as Chief Petitioner for Oregon’s Death with Dignity Act, she has championed initiatives that enable individuals to consider a full range of choices and be full participants in their health care decisions.

For our Canadians Readers we suggest connecting with Virtual Hospice for questions related to palliative care and hospice.

“The Market” Broadcasts Across Canada

Hot Docs 2011 Don Haig Award Winner

Twelve years ago, when I was still living in India, I had maids who had scars. When they used to casually tell us they had sold their kidneys, I did not see it as a symptom of a larger evil. -Rama Rau, Director

Every 3 days a Canadian dies waiting for a new kidney; in the US it’s a person a day. Where do patients go to fill the gap?

Filmmaker Rama Rau’s revealing documentary “The Market” follows individual stories that explore the larger issues surrounding the organ trade – and looks at these issues from both a Western point of view as well as from the point of view of people selling their organs. What are the ethics of organ buying and selling? And, what would we ourselves do if we were forced into a similar dilemma?

In a slum in Chennai, India most of the fishermen are in post-trauma conditions, having witnessed or been in the wake of the 2004 Indian Ocean tsunami. They simply refuse to go back to the sea for their livelihood, and to survive, their wives have taken to selling their kidneys to feed the children. The tsunami has accelerated what is becoming an accepted form of collateral – the kidney.

The global trade in human organs has become one of the world’s most profitable and dangerous enterprises; a black market that has become as large as the drug and human trafficking trade.

Hema, a young mother of two, wants to sell her kidney so she can pay off the crippling debts of her family. A broker tells Hema she’ll get $2500 for her kidney. If she sells she will be the fifth member of her family to sell a kidney for an amount that represents several years’ wages.

In Canada, Sandra’s kidneys are failing and her blood type is not compatible with her mother or daughter, ruling them out as donors. Sandra has been waiting for a new kidney for over 5 years and the disease has, at age 40, put her life on hold.   Her mother, Christina, can’t bear the thought of losing her daughter and Sandra’s teenage daughter Kylie is putting on a brave face.

Two different people. Two journeys. With one end. To find a kidney, someone has to lose one….

Buy. Or sell?

The Market broadcasts at the following times:

TVO

  • Wednesday, December 7 at 9pm & midnight
  • Sunday, December 11 at 11pm

KNOWLEGE NETWORK

  • Tuesday, December 13 at 9pm
  • Wednesday, December 14 at midnight

SCN TELEVISION

  • Sunday, December 18th at 9pm