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Let's replace patient suffering with patient suffrage
Mercer Island, WA
Saturday, October 04, 2008
6.jpg "Vicki Rackner MD")
Vicki Rackner MD
This November, Washington State voters will decide whether to give terminally ill patients the legal right to end their lives with lethal doses of physician-prescribed medication.
As a physician I'm deeply troubled by this proposed legislation. Its presence on the ballot speaks to fundamental unmet patient needs that transcend the question of a single dose of medication. This is a grass-roots attempt by patients to formalize their right to make their voices heard. They want a vote about the direction of their medical care and they're starting with the last vote they will ever cast in life.
Patients turn to their doctors for the alleviation of pain and suffering. Let's replace patient suffering with patient suffrage--a patient's right to vote about personal medical choices. Let's let their voices be heard and votes be counted every time they see their doctors. We can do better than recognizing patients' right to place the final vote. In fact, if we could address the following legitimate concerns, the need for this legislation would be mitigated.
Fear of uncontrolled pain at the end of life.
Up to 70% of cancer patients have pain that could be controlled with more aggressive treatment, and factors from both sides of the doctor-patient relationship contribute.
Many patients falsely believe that pain at the end of life is inevitable, so they remain silent. Further, many patients and doctors and nurses fear narcotics. My own elderly patient in her final weeks of life expressed concern that she would become hooked. Health care professionals' fear of overtreating patients with a lethal dose of narcotics that leads to undertreatment—choosing pain over death—leads to proposed legislation that allows patients to choose death over pain.
All of us—patients and doctors and nurses and family caregivers—can contribute to solutions by routinely including pain management in medical conversations.
Fear of being a burden to family and friends.
If you have not cared for aging parents, a sick spouse or a failing friend, this issue may not be on your radar screen. Family caregiving is a topic veiled in hushed silence.
The facts are sobering. Family and friends who help loved ones deal with acute and chronic illness serve as an extension of our health care system, providing 80% of all long-term care services in this country. Their unpaid service is valued at over $300 billion a year, on par with the entire annual Medicare budget.
Family caregiving involves heavy lifting, both figuratively and sometimes physically. . Let's ease the burden of family caregivers by offering resources that help them care for themselves as they care for others so that this task becomes an act of love.
Fear of depleting the family's financial resources
Imagine a proud man who has worked and saved his whole life. Suddenly he faces a life-threatening illness. He sees his life savings evaporate as he pays the medical bills. He fears that he may die and leave his wife penniless. Does this legislation set the stage for a modern day re-enactment of It's a Wonderful Life?
End-of-life care is expensive. Financially stretched individuals who can barely afford health insurance may just dismiss long-term care insurance as a luxury. Let's include the economics of end-of-life care in our conversations about health care reform.
Fear of a life without dignity
While we all agree about the value of a life with dignity, real life choices quickly reveal the nuanced complexity of this topic.
A patient casually mentioned that he did not want to go on living if his son had to "clean his bottom" as he did for his own father. Yet, in the final stages of his cancer treatment, this became a non-issue.
Another patient tearfully described her most recent visit with her twin sister in advanced stages of dementia. "My sister didn't even recognize me. I told my husband that I would never want to live like that"
Who decides whether there is enough quality and dignity in each day to go on to the next and what is the trigger for ending life? Is the patient competent to decide, or is his/her judgment clouded by depression that so often accompanies illness?
Efforts to judge the value of the life quickly becomes a slippery slope. However, we can use this legislation as a reminder to look for the value and dignity in each person who crosses our path.
Fear of a lack of self-determination
For those who like to believe that they control their destiny, illness is a rude wake-up call. Any dire diagnosis—including our current dire financial diagnosis—serves as a reminder that our sense that we control the events that come our way may be more fantasy than reality.
However, we control of the way in which we respond to adversity.
Many patients feel disempowered as they enter the health care system. A client advocating for her hospitalized loved one said, "The nurses told Tom that he couldn't wear his Patagonia sweater that makes him feel warm and safe. It's like layers of his identity get stripped when he checks into the hospital" In many medical settings, patients have little say about when they sleep, whether they're awakened at night or what they eat. Their ability to regulate their day-to-day lives is restricted, not by the disease by rather by the care intended to treat the disease.
When patients have more control, they do better. Patients who manage their pain with a PCA--a special IV apparatus that allows them to push a button and administer a small, safe dose of pain medication--require a lower dose of medication to get the same level of pain relief as when nurses administer the same drug. PCA, or Patient Controlled Analgesia, describes the spirit of patient-centered hospice care that offers so much to patients and their families in the dying process.
This initiative is a cry for help. It's a request to give dying patients a vote, even if it's the last and only vote they cast.
As we take on reform of our crumbling health care system, let's invite patients into the conversation. Let's give them the right to vote. They can and will make good choices. Further they are an overlooked part of the solutions hidden in plain sight.
Vicki Rackner MD, founder and President of Medical Bridges is a surgeon who left the operating room to help patients and their family caregivers manage their health. Dr. Rackner helps both individuals and businesses stretch their health care dollars through better doctor-patient collaboration. To get your free special report The Biggest Skeleton in Your Doctor's Closet, write DrRackner@MedicalBridges.com or call 425 451-3777.
As a physician I'm deeply troubled by this proposed legislation. Its presence on the ballot speaks to fundamental unmet patient needs that transcend the question of a single dose of medication. This is a grass-roots attempt by patients to formalize their right to make their voices heard. They want a vote about the direction of their medical care and they're starting with the last vote they will ever cast in life.
Patients turn to their doctors for the alleviation of pain and suffering. Let's replace patient suffering with patient suffrage--a patient's right to vote about personal medical choices. Let's let their voices be heard and votes be counted every time they see their doctors. We can do better than recognizing patients' right to place the final vote. In fact, if we could address the following legitimate concerns, the need for this legislation would be mitigated.
Fear of uncontrolled pain at the end of life.
Up to 70% of cancer patients have pain that could be controlled with more aggressive treatment, and factors from both sides of the doctor-patient relationship contribute.
Many patients falsely believe that pain at the end of life is inevitable, so they remain silent. Further, many patients and doctors and nurses fear narcotics. My own elderly patient in her final weeks of life expressed concern that she would become hooked. Health care professionals' fear of overtreating patients with a lethal dose of narcotics that leads to undertreatment—choosing pain over death—leads to proposed legislation that allows patients to choose death over pain.
All of us—patients and doctors and nurses and family caregivers—can contribute to solutions by routinely including pain management in medical conversations.
Fear of being a burden to family and friends.
If you have not cared for aging parents, a sick spouse or a failing friend, this issue may not be on your radar screen. Family caregiving is a topic veiled in hushed silence.
The facts are sobering. Family and friends who help loved ones deal with acute and chronic illness serve as an extension of our health care system, providing 80% of all long-term care services in this country. Their unpaid service is valued at over $300 billion a year, on par with the entire annual Medicare budget.
Family caregiving involves heavy lifting, both figuratively and sometimes physically. . Let's ease the burden of family caregivers by offering resources that help them care for themselves as they care for others so that this task becomes an act of love.
Fear of depleting the family's financial resources
Imagine a proud man who has worked and saved his whole life. Suddenly he faces a life-threatening illness. He sees his life savings evaporate as he pays the medical bills. He fears that he may die and leave his wife penniless. Does this legislation set the stage for a modern day re-enactment of It's a Wonderful Life?
End-of-life care is expensive. Financially stretched individuals who can barely afford health insurance may just dismiss long-term care insurance as a luxury. Let's include the economics of end-of-life care in our conversations about health care reform.
Fear of a life without dignity
While we all agree about the value of a life with dignity, real life choices quickly reveal the nuanced complexity of this topic.
A patient casually mentioned that he did not want to go on living if his son had to "clean his bottom" as he did for his own father. Yet, in the final stages of his cancer treatment, this became a non-issue.
Another patient tearfully described her most recent visit with her twin sister in advanced stages of dementia. "My sister didn't even recognize me. I told my husband that I would never want to live like that"
Who decides whether there is enough quality and dignity in each day to go on to the next and what is the trigger for ending life? Is the patient competent to decide, or is his/her judgment clouded by depression that so often accompanies illness?
Efforts to judge the value of the life quickly becomes a slippery slope. However, we can use this legislation as a reminder to look for the value and dignity in each person who crosses our path.
Fear of a lack of self-determination
For those who like to believe that they control their destiny, illness is a rude wake-up call. Any dire diagnosis—including our current dire financial diagnosis—serves as a reminder that our sense that we control the events that come our way may be more fantasy than reality.
However, we control of the way in which we respond to adversity.
Many patients feel disempowered as they enter the health care system. A client advocating for her hospitalized loved one said, "The nurses told Tom that he couldn't wear his Patagonia sweater that makes him feel warm and safe. It's like layers of his identity get stripped when he checks into the hospital" In many medical settings, patients have little say about when they sleep, whether they're awakened at night or what they eat. Their ability to regulate their day-to-day lives is restricted, not by the disease by rather by the care intended to treat the disease.
When patients have more control, they do better. Patients who manage their pain with a PCA--a special IV apparatus that allows them to push a button and administer a small, safe dose of pain medication--require a lower dose of medication to get the same level of pain relief as when nurses administer the same drug. PCA, or Patient Controlled Analgesia, describes the spirit of patient-centered hospice care that offers so much to patients and their families in the dying process.
This initiative is a cry for help. It's a request to give dying patients a vote, even if it's the last and only vote they cast.
As we take on reform of our crumbling health care system, let's invite patients into the conversation. Let's give them the right to vote. They can and will make good choices. Further they are an overlooked part of the solutions hidden in plain sight.
Vicki Rackner MD, founder and President of Medical Bridges is a surgeon who left the operating room to help patients and their family caregivers manage their health. Dr. Rackner helps both individuals and businesses stretch their health care dollars through better doctor-patient collaboration. To get your free special report The Biggest Skeleton in Your Doctor's Closet, write DrRackner@MedicalBridges.com or call 425 451-3777.
Suzy Rotunna
Mercer Island, WA
425-451-3777
