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It’s a fraught question, but unless we move beyond caricatured “death panels” and deal with grim realities thoughtfully and responsibly, we’re all in trouble.

How do you envision death with dignity? I like to think of being at home in the comforting and supportive environment of family and friends. But the odds are that neither you nor I will leave this world as we might wish — unless policymakers change course.

End-of-life care is perhaps one of the most complex, emotional, and delicate issues in all of health care. Those final weeks and months can be an incredibly challenging and, too frequently, confusing period for us. At a time we hope for peace, tranquility, and dignity, a patient is often pulled in opposing directions by doctors, intensive care unit treatment options, family and friends, and by the demands of one’s own — at times excruciating — pain, and stubborn defiance.

My perspective comes as a surgeon who by the nature of my specialties of heart disease and cancer has walked with hundreds of patients and their families though these final days of life. It is never easy.

Now is the time for a national conversation on how we should allow death to unfold. Why now? Because in this technology-driven age of high expectations, we are losing patient autonomy and dignity in dying — and it is costing each of us a lot. This is a discussion important to us as patients, families, care givers, and policymakers whose responsibility it is to set a framework where autonomy and dignity in both healing and death are maximized.

The discussion must rise above the rhetoric of “death panels” and partisanship; it must be civil, inclusive, and thoughtful. It must include respect for every individual patient’s wishes, consideration of often complicated family dynamics, and the roles of doctors, nurses, and healthcare providers. And yes, in this day and time of miraculous but expensive technology, the conversation must include the recognition that our society cannot afford the skyrocketing cost of inappropriate end-of-life care.

Just last week, a grieving son asked me how it is even possible that the last two months of his 93-year old mother’s life could cost $200,000 in medical bills when his mother, suffering from fatal cancer, wanted no further extraordinary treatment. Surely there is a better way. But what are the solutions?

Cost of healthcare is a challenging issue because solutions often suggest fewer services or “less care.” But increasingly, we learn that is not the case; they can mean more appropriate care. Cost discussions become especially sensitive when it centers on care and treatment at the end of life. But in reality cost is an issue —– especially when tied to futile spending which detracts from the patient’s wishes and the dignity of death and dying.

Part of the cost problem is the low barrier to expensive, but truly miraculous and potentially life-saving, technology. I have lived it. My medical specialty included lung transplants, artificial hearts, and mechanical extracorporeal circulation. Such advances have tremendously improved American medicine. Over the last 50 years, average lifespan has increased two months every year! We live almost 10 years longer today than we did in 1960. We routinely transplant hearts into patients who would otherwise die within a month, and they live an additional 20 years. Fathers doomed to death live to watch their daughters marry and have children. But technology comes with a hefty cost, if misused.

Here are the facts: 30 percent of Medicare dollars are spent in the last months of life. That amounts to more than $150 billion annually. On top of that, a quarter of Medicare recipients spend more than the total value of all their assets on out-of-pocket health care expenses during the last five years of their lives. Every day in an intensive care unit can cost $10,000. Nearly 1 in 5 Americans spend their last days in an ICU.

Technology and intensive care treatment have limitations when misapplied. People spend fortunes on the last months of life. The high expectations and demands of grieving family members fuel this process. And because someone else is always paying, it is inevitable that unnecessary tests and procedures and high-intensity services creep into the equation. The system is set up and incentivized to bend to the whim of an unusual family member’s demand to “keep mom alive at all costs,” even if she is 93 and hopelessly ill.

So how do we fix all this? We begin a national, high-profile, civil dialogue, which should begin in the living rooms of patients and their families and extend to nurses’ and doctors’ offices, hospitals, religious institutions, and policy chambers. “How do I want to die?” That’s the framing question. It’s a tough place to start, but grounds the discussion in the reality that unless we act, our final days will be spent very differently than we would like.

Ventilators, mechanical heart assist devices, high-tech intensive care units, and powerful medicines provide the means of postponing the inevitable, usually uncomfortably and at high cost, while stripping away independence and dignity from those final days. Do we want to die at home or strapped to machines in a hospital bed? How much quality of life, how much loss of normal function, are we prepared to live with? Does my husband or daughter know my wishes?

Here are three proposals we should include in the conversation.

1.

Each of us must act to assume responsibility for expressing our preferences and intentions up front. Act today. Begin with establishing a written “advanced directive” to make your intentions clear. One type of advanced directive is a living will, which applies if you become incapacitated and lack competency to decide medical questions for yourself. Another important advance directive is the “durable healthcare power of attorney,” which designates a person to make medical decisions for you if you have not signed a living will or other directive.

Four out of five of us have not done this. These important legal documents provide an essential roadmap for your preferences and relieve your family and your doctors from having to guess what you would really have wanted and help resolves conflicts among family members. Share your values and intentions directly with your doctor, your family, and leader in your life.

2.

Medical education for our caregivers must be reformed to more specially address end-of-life issues. Many doctors and nurses are inadequately trained to lead families though these challenging times. How do you determine when further care is futile and then compassionately communicate the moment when technology adds no value, and in fact detracts from the dignity of life? How do you handle the well-intended-but-unreasonable family member who demands “more care” when the science says it’s futile? A physician, nurse, or hospital will worry about a lawsuit if the armamentarium of high technology is not exhausted even though evidence-based medicine says it is a waste of resources.

My physician dad and earlier generations of doctors were not confronted with a health service environment so complex and replete with alternatives as ours. In their day, medical science was inexpensive and limited in scope. They had less technology at their fingertips. Today’s physician requires more training in end-of-life communication and evidence-based decision-making.

3.

Expand both palliative and hospice care. Hospice provides compassionate and appropriately specialized care for those who will soon die. The setting is typically at home. Palliative care is a new specialty grounded on a multifaceted team-approach to comprehensively manage severe, often long-lasting chronic disease and persistent pain and suffering. Both center on autonomy and dignity and appropriate medical and social care for a particular patient’s medical condition. Both are based on science and evidence-based medicine. Both have been shown to improve patient satisfaction, reduce pain and discomfort, and improve quality of life.

Expansion will require rethinking reimbursement mechanisms to allow scalability. How do these two models fit within more integrated health systems? How should caregivers be compensated for providing more appropriate care but not more procedures and more technology?

Isaac Asimov wrote, “Life is pleasant. Death is peaceful. It is the transition that is troublesome.” It is time to focus on the transition. No one has the answers yet. But we can find them together. The way to begin is to initiate a rational national dialogue, as uncomfortable as the conversation may seem to be.

Dr. William H. Frist is a nationally acclaimed heart transplant surgeon, former U.S. Senate Majority Leader, the chairman of Hope Through Healing Hands and Tennessee SCORE, professor of surgery, and author of six books. Learn more about his work at BillFrist.com.

Lawmakers in D.C. may truly be committed to improving America’s health-care system. But according to actual physicians, our leaders are going about it all wrong

Want real health reform that is in the interest of you and your family? Don’t make the same mistake that Washington did. In formulating ObamaCare, the politicians listened to lobbyists, policy wonks, academics, health theorists, regulators, and occasionally to each other. But they failed to listen to the people who actually care for patients: Doctors. Granted, the lobbyists for physician groups were at the table, but not the doctor him or herself. Ironic, isn’t it? Especially when it’s the doctor who has the daily responsibility of directly caring for the patient.

Go ahead, ask your physician at your next visit what she or he thinks of current Washington-directed reform and its impact on the doctor-patient relationship. What you hear will likely surprise you, because it will likely be markedly different from what you hear from Washington. The policy theorists are simply too far removed from the reality of front-line patient care. Health reform, whether via the implementation of ObamaCare or the GOP’s “repeal and replace” plan, should no longer ignore the input and counsel of experienced, front-line, practicing doctors.

Here is a sampling of what my own internist, who has taken care of thousands of patients over the past 20 years, shared with me:

Frist: We hear the electronic health record (EHR) will solve much of what ails our health sector.

Doctor:

The EHR is not the savior of the medical system. In fact, it is effectively destroying the relational aspect of the art of medicine. Instead of talking with a patient and hearing her “story,” we are being relegated to looking at a computer screen and pointing/clicking during the visit. I know there are long-term benefits to an EHR, but most internists who value the art of medicine will tell you it is killing the “story.” And it is expensive. Physicians with EHRs see 15 to 30 percent fewer patients (and work later into the night). And yet with ObamaCare, we will be asked to take care of an additional 30 million patients.

We are told that increased government regulation and monitoring will reduce waste.

Unnecessary regulations and increased paperwork are drowning us and reducing quality of care. We have allowed just “one more thing” to be added over and over again. The camel’s back is now breaking. I have never seen physicians as depressed and stressed in my 20 years of practice. At each visit, I am required to tell the government whether the patient I am seeing had a flu shot last winter! Please help me understand how that improves care. I know the many quality metrics (i.e.: check this box) mean well, but they are having the opposite effect. They are diminishing quality because they (the boxes) become the focus of each visit, rather than the human interaction.

But increased documentation in charts and billing surely improves value to the patient?

Hardly. We are now working with 17,000 diagnosis/billing codes — absolutely ridiculous. There are nine codes for abdominal pain (right upper, left upper, right lower, left lower — you get the idea). And the government has recently increased the number of codes from 17,000 to 155,000. The bottom line — 300 codes would probably cover everything. It could be printed in a four-page leaflet, not three large volumes. It is unnecessarily complicated and it does absolutely nothing to improve patient care.

Doesn’t more careful documentation with the required codes help eliminate fraud?

That’s ridiculous. It is just the opposite. The actual diagnosis/billing codes have nothing to do with fraud. The EHR creates the appearance of a perfectly prepared note. In truth, it simply makes it easier to copy and paste from note to note. The note is filled with unnecessary information, making the truly pertinent information hard to find (and therefore negatively impacts patient care). The nice-looking, “electronic documentation” in the EHR opens the door for the unethical doctor to game the system and get away with it. It just makes it easier for them to upcode and not get caught. Fraud is skyrocketing while the EHR provides the cover.

But Washington tells us that “evidenced-based medicine” is the surest way to better outcomes.

Quality care comes from a careful, professional analysis of a clinical situation that leads to a correct diagnosis and treatment for the particular patient at hand. Quality care will never be found by mindlessly marking boxes or following algorithms that are at the heart of what is being called “quality measures and evidence-based medicine.”

What stands between you and caring for the patient?

The paperwork is overwhelming — nursing home admission forms, medical device forms, diabetic supply forms, home health forms, insurance records requests for “additional information.” Everyone has their form that must be completed. All forms roll downhill and the internist is the final resting place. Regulations requiring more needless paperwork mean less time for patients.

The law in Washington is that your reimbursement is to be cut every year. But you seem to be working harder than ever.

Reimbursement for our services continues to decline, because overhead costs rise. I am very blessed. I am paid well. But I have not seen a raise in 13 years. While CEOs, managers, administrators, benefit managers, and insurance executives see regular raises and bonuses. Physicians in our clinic feel fortunate that our pay has not declined. Yet our workload is so much heavier than it once was. Not because of patient volume, but because of the higher expectations of patients, the higher complexity of medical care, and the excess “stuff” that we are being required to do.

I’m told the primary care shortage of 40,000 doctors over the next 10 years can be met by non-physicians.

The suggestion that non-physician practitioners can fill the primary care needs of the American people is simply false. Their training, knowledge base, and ability to form a complete differential diagnosis is limited. The press often proclaims that nurse practitioners can replace doctors. There is a role for the NP and we need to support that role. But to suggest that someone with two years of training can provide equivalent care to that of a physician who, after college, has spent four years in medical school, three to four years in residency (working days and nights), and who, each day, makes hundreds of decisions for which he or she is ultimately responsible is not only wrong, it disrespects the training and ability of the physician. Remember, quality care is not measured by patient satisfaction surveys, but instead, by the ability to properly diagnose and treat a patient.

So… we’re not moving in the right direction with health reform?

At the age of 49, I feel that the practice of the art of medicine is becoming impossible, even for those of us who live for the chance to care for others. Our goal should never be to cure disease. Instead, our goal should be to heal people. The direction of our present system is negatively impacting the ability of good doctors to try and heal people. We must remove the growing distractions and be allowed to spend time with each unique patient and their “story.” We need to ask of each regulation or mandate that “seems” to sound so good: How will it impact the doctor-patient relationship? It is now, and will always, be within this relationship that healing occurs and true quality care is found.

—

Those are the words of one, but they are the sentiment of many. Ask and see.

And what is interesting is that this sort of conversation from the front-line would never make it all the way up to my office when I was majority leader of the U.S. Senate. The existing, overly restrictive filters of Washington lobbyists and bureaucracy simply don’t allow such real-life information to flow all the way up to the legislator.

So for the next round of reform, let’s make sure we don’t ignore the insights of real-life doctors. Let’s make sure this time around they are at the table.

Dr. William H. Frist is a nationally acclaimed heart transplant surgeon, former U.S. Senate Majority Leader, the chairman of Hope Through Healing Hands and Tennessee SCORE, professor of surgery, and author of six books. Learn more about his work at BillFrist.com.

Need for affordable care cuts across party lines
By Tom Daschle and Bill Frist

On June 28, 2012, the Supreme Court issued a decision that affects the health and well-being of every American, as well as the fiscal future of our nation. By affirming the constitutionality of the Patient Protection and Affordable Care Act (PPACA), the private and public sectors can now turn to implementation, along with natural and needed shaping and modification of the underlying policy along the way.

The court’s decision can and should be a turning point for our national discussion and action on healthcare. Though the upcoming elections might amplify our differences in the short term, it is in the long-term interest of every American to begin now to work together and forge consensus-based solutions for our nation’s most critical healthcare challenges.

The United States currently has an expensive, uncoordinated and inefficient healthcare system. By 2020, healthcare spending will make up one-fifth of our national economy. Excessive and wasteful healthcare spending fuels our nation’s exploding federal debt and imposes unsustainable burdens on our federal and state governments, employers, individuals and their families. This is a grave threat to our nation’s future health, economic viability and ability to compete in an increasingly competitive global marketplace.
As the co-leaders of the Bipartisan Policy Center Health Project, our mission is to bring together federal, state, business and workforce leaders to develop health system solutions that address ongoing budgetary and healthcare reform challenges. We are embarking on a new initiative to confront and curb the country’s out-of-control healthcare cost growth: Our goal is to promote a rational, competitive, accessible and affordable healthcare system. We will be collaborating on this initiative with Alice Rivlin and former Sen. Pete Domenici (R-N.M.), the distinguished co-chairs of the Bipartisan Policy Center Debt Reduction Task Force. The task force is dedicated to reducing the federal deficit and helping America achieve a sustainable fiscal path, which simply cannot be accomplished without significant healthcare reform.

Healthcare cost containment is a profoundly complex and divisive issue, but we are steadfast in our belief that this issue can be addressed in a meaningful way. We as a nation cannot wait any longer. Our broken healthcare system can be fixed; there are solutions to each of the challenges. But we will never devise and apply them until we commit to do so together, reaching across the political aisle to work with one another.

All Americans generally agree on the end goals for health reform — appropriate and effective patient care, lower costs and easier access for all. We might not agree on the individual mandate, but we do agree on the power of embracing personal responsibility for our health and health decisions. We do not always agree on the most effective way to execute state insurance exchanges, but we can agree that these exchanges provide opportunities for states to use the power of market competition to control costs and engage their constituents on the individual level.

We all know that greater transparency in pricing and outcomes will help eliminate duplication, waste and inefficiency. We want to see our system provide frictionless and coordinated care that brings satisfaction to caregivers and peace of mind to patients. We want our health records and data systems to be brought into the 21st century through health information technology, providing vital health information when and where it is needed instantly and securely. The only question is how we get there.

Healthcare is in a period of explosive growth and transformation. Every day, the sector performs technological miracles, creates jobs and saves lives. We must harness this power, but at the same time, strive to do more. The American healthcare system has the power to be more efficient and more accurate, without sacrificing our nation’s capacity for private-sector innovation, productive public-private collaboration and incredible technological advancement.

Allowing healthcare costs to soar at unsustainable levels and allowing America to fall behind on key indicators of care quality and access is not a political victory for either side of the aisle. Assigning blame along partisan lines gets us nowhere.

A healthy population, a happy and productive workforce, and affordable healthcare are vital to the future of our nation. Unless we are willing to work together to transform our healthcare system for the better, these essential goals will remain out of our reach.

Former Senate Majority Leaders Daschle (D-S.D.), now a senior policy adviser at DLA Piper, and Frist (R-Tenn.) lead the Bipartisan Policy Center’s Health Project.

These days, Washington can’t agree on anything. Thankfully, though, some brave lawmakers are still willing to cross the aisle to fight a deadly disease.

We live in fiercely contentious times. Every day, it seems, a new issue arises that Democrats and Republicans cannot agree on. Health care, taxes, energy, favorite flavor of ice cream — it seems our elected leaders must disagree at every turn. But one issue that has so far repulsed the partisan pressures of the times was highlighted in our nation’s capital last week: the fight against HIV/AIDS.

Washington, D.C., hosted the XIX International AIDS Conference. It was an energetic, passion-filled week. More than 23,000 attendees from across the globe heard and engaged speakers including both former President Bill Clinton and Secretary of State Hillary Clinton, cutting edge research scientists, activists, Nobel laureates, world leaders, and even a few celebrities. Perhaps even more important, many HIV positive men and women came together from dozens of countries to find a caring, supportive community.

The United States — and more specifically, the American taxpayer — has been the undisputed world leader in fighting this cagey virus for which there is no cure. This single virus has taken the lives of more than 580,000 Americans and 25 million globally since it emerged here in our country just over 30 years ago. The conference was a celebration of the remarkable success made because of this leadership, and a call for continued support.

When we stop the hollowing out of societies and inspire hope, there is no limit to what we can accomplish together.

As moderator for a panel on the congressional role, I witnessed what I felt to be an accurate portrayal of how we got to the point where we could celebrate so many successes. Fundamental to the progress has been bipartisanship. Participating were two Democrats, Reps. Barbara Lee (Calif.) and Sen. Chris Coons (Del.), and two Republicans, Sens. Marco Rubio (Fla.) and Mike Enzi (Wyo.).

Our panel’s balanced party identification was more than symbolism, as Rep. Lee acknowledged when she described the U.S. response as bipartisan, saying, “it never would have happened without … Republicans in the House and the Senate.” Indeed, the bold $15 billion PEPFAR commitment initiated by President George W. Bush and supported by Congress was quickly taken up and expanded under the Obama administration. All panel members were quick to praise the leadership and dedication of the other’s party.

And there is cause for such praise. PEPFAR, unprecedented in scope and size in its combatting of a single disease, has saved millions of lives, provided 4.5 million people with treatment, enabled hundreds of thousands of HIV positive mothers to give birth to healthy, disease-free children, and allowed tens of millions to receive testing, counseling and care. In 1995, 50,000 Americans died of AIDS. In 2009, that number was down to 20,000. Promisingly, partner countries are increasingly supporting this work internally. Last year, poorer countries invested $8.6 billion into the fight as international financing provided by wealthier nations amounted to $8.2 billion. As I have said for years, when we stop the hollowing out of societies and inspire hope, there is no limit to what we can accomplish together.

The results of this bipartisan American commitment are in, and they are undeniable. Our past investment has inspired others to contribute, saved lives at home and around the world, and empowered economic development with a healthier workforce. But the risk today in a more highly charged partisan environment and in more fiscally challenging times is to say we have done our job and it’s time to move on. That would be a huge mistake, and all our progress would be erased because we still don’t have a cure. Around the world and at home, the AIDS epidemic is far from over.

Rep. Lee noted that there are still American communities where “the percentages [of AIDS] are comparable to sub-Saharan Africa.” This is unacceptable, and you do not have to look far into the past to a time when both parties wholeheartedly understood this.

As Sen. Enzi recollected, in 2003 the PEPFAR bill “passed both the House and Senate unanimously, un-amended, in less than two months. That never happens.” But Enzi elaborated that five years later, when the time came for reauthorization under President Bush, the measure passed “again in a bipartisan way” — although “we didn’t have quite the same votes that we had the first time.”

However, hope for preserving this flame of bipartisan conviction was articulately reflected by the two other members of the panel, Sens. Rubio and Coons, each representing different parties, and neither of whom were in office during the original PEPFAR passage. They have emerged as powerful and knowledgeable voices on global health and HIV. Such leadership is vital when the focus of Congress, today filled with new members who were not around when PEPFAR originally passed, is understandably on domestic issues, the economy, jobs, and health care.

While living and working in Africa in the mid 1980s, Sen. Coons was inspired by the profound human tragedy he witnessed firsthand and has transformed these experiences into true leadership. But he warns that we “can’t take [continued U.S. leadership] for granted in what is an incredibly difficult, very partisan and very divided Congress at a time when our politics are in some ways the rockiest they’ve been in more than a generation.” But out of a world of mudslinging and disagreement, the Democratic senator says it “has been really refreshing to be able to work closely with Republicans” to fight this epidemic.

At a time when our national debt is skyrocketing, the typical American finds it difficult to understand how massive spending for people overseas, even if it is lifesaving, can be justified. But just how massive is this spending really? Not the 25 percent of our budget that most Americans think. In truth, our foreign aid spending is less than 1 percent of the federal budget. As Sen. Rubio, himself a favorite of the Tea Party, eloquently asserted, “If you zeroed out foreign aid it would do nothing for the debt, but it would be devastating not just for the world, but for America’s role in it.”

Progress has been mind-blowing. Science made possible by taxpayer investment through the NIH has brought miraculous new drugs to treat and, just this month, new medicines to prevent. Cost of treatment has fallen ten-fold and continues to plummet. Prevention strategies have turned the tide of devastation. But all this was accomplished because Americans came together, Republican and Democrat, working hand in hand in a bipartisan and meaningful way, rallying together to fashion solutions that are changing the course of history.

As Sen. Rubio declared, “the closer we get to the finish line is not the time to ease up, it’s the time to run through the tape.” Let’s continue to put our partisan differences aside and run this one together.

Dr. William H. Frist is a nationally acclaimed heart transplant surgeon, former U.S. Senate Majority Leader, the chairman of Hope Through Healing Hands and Tennessee SCORE, professor of surgery, and author of six books. Learn more about his work at BillFrist.com.