Elderly need options for palliative care

(The Tennessean, October, 20, 2013)

By Sen. Bill Frist, M.D. and Manoj Jain, M.D.

A patient — we will call her Matilda — has thin, silvery hair, deep-set eyes and is in her mid-80s. She worked as a factory worker until she was widowed and now lives alone a few miles away from two working daughters.

Matilda’s swollen body reveals some of the health challenges she faces. She has congestive heart failure and recurrent blood clots, both of which cause swelling in her legs and led to a hospitalization a few months ago for a skin infection. She improved and went home and with help still managed her own care: orchestrating a dozen medications daily, including a blood thinner, her cooking and frequent doctor appointments.

A few weeks ago, she contracted pneumonia, probably caused by aspiration — food going down her windpipe rather than her esophagus — probably during a minor stroke. She was admitted to the intensive-care unit but just avoided intubation and being connected to a ventilator.

Now, Matilda is better. She does not want aggressive treatment such as a ventilator or life resuscitation. She does not want to be in a nursing home. She does not have a terminal illness. As the time for her discharge from the hospital nears, the question for her daughters, her doctors, the social workers is: Where should she go? Who will care for her? No model of care seems to work well.

Our present model of health care focuses on either providing life-prolonging aggressive care regardless of quality of life in the hospital and ICU setting, or providing hospice care when patients have a life expectancy of less than six months. For patients who are slowly declining, a nursing home may be their only option for getting the support they need.

Matilda and millions of other elderly Americans do not fit into these molds. They deserve better options than these.

A new option to consider

Palliative care is one such option that seeks to intervene early in the course of chronic illness; to ease the patient from a curative goal to a comfort goal; and to meet medical, social, psychological, spiritual and family needs. Over time, if the illness becomes terminal, the patient is moved to hospice care.

The palliative care model is still relatively new in the U.S. Under this model, Matilda’s primary care physician would work closely with a palliative care physician, nurse practitioner, nurse, social worker and even a chaplain. Together, the palliative care team would manage Matilda’s medicines, answer calls in the middle of the night and work to prevent hospital readmission. The team’s dual focus is on making her comfortable and continuing full medical treatment of her conditions.

A network of resources treats the progression of the illness while trying to avoid emergencies. Instead of jumping from one crisis to the next, leaving Matilda disoriented and fearful, palliative care provides her with continuity of care and support.

So why do we not see more health providers, hospitals and doctors offering palliative care services?

The major stumbling block is payment methods. The current structure of Medicare and Medicaid is fee-for-service reimbursement instead of focusing on the whole patient and providing care such as frequent home visits and 24/7 telephone support. Since most insurance plans take their cue from these federal programs, they don’t support palliative care, either.

There is one new piece of legislation that would begin to address this need: The Care Planning Act, S. 1439, sponsored by U.S. Sens. John Isakson, R-Ga., and Mark Warner, D-Va., and introduced in August. It would amend the Social Security Act, which encompasses Medicaid and Medicare, and it would provide specific compensation to physicians for one-on-one, end-of-life planning discussions with their patients. While this would certainly help encourage physicians to take the time to have these conversations, the services planned and needed still require support.

The bill supports pilot palliative care programs, which would deliver coordinated palliative care including an interdisciplinary team, 24/7 telephone support and home visits. Once a successful pilot emerged, then a systemwide solution could be implemented.

While The Care Planning Act is a step in the right direction, it still comes with a price tag. Yet, the financial benefits of a palliative care model with fewer hospital admission and ER visits would outweigh the costs. Given that these savings come with longer life expectancy and a better quality of life at the end of life, palliative care programs are not just a benefit, but also a necessary addition to our medical model.

Over the past several weeks, we’ve encouraged everyone to discuss end-of-life issues with their families and physicians. Initiating these conversations ensures that your family is aware of your wishes, and that hard decisions can be made with peace of mind.

End-of-life care is not only an issue facing us as individuals, though: The health care system also has reached a critical mass. High costs and low patient value are not sustainable. It’s time for a different model of care.

Bill Frist is a heart transplant surgeon and former U.S. Senate majority leader. Manoj Jain is a Tennessee doctor who writes for The Washington Post.

This article was originally featured in The Tennessean on October 20, 2013 http://www.tennessean.com/apps/pbcs.dll/article?AID=2013310200075




We often avoid important conversation

(The Tennessean, October 6, 2013)

By Sen. Bill Frist, M.D. and Manoj Jain, M.D.

When a patient’s lymph node biopsy came back as a rare form of lymphoma, he did not have long to live. In the six months before he died, he did not settle his family affairs or financial accounts. His doctors should have initiated a frank conversation to best equip him to plan for his remaining time.

End-of-life conversations between patients and their doctors are not happening often enough. A 2009 Archives of Internal Medicine study of patients with terminal metastatic lung cancer (the majority of whom lived only two months after they were interviewed) found that just slightly more than half of their health care providers had discussed hospice care with them.

Every patient will face the end of life. So why don’t all doctors discuss options for end-of-life care with their patients?

In this patient’s case, I know why his physicians did not push harder for such a conversation. They were hesitant to give him a timeline for the course of his illness. They were not ready for the final prognosis. They planned to talk about it later.

I (Dr. Jain) know this was the case because I was one of his physicians. And I wish I had pushed early for an end-of-life conversation.

Unready for prognosis

Doctors are conflicted because — in most cases — forecasting a timeline is hard to do, even among the most experienced clinicians. For a patient awaiting a heart transplant, the outcome without a donor organ is very clear. But several studies have suggested that when dealing with many terminal illnesses, especially cancer, doctors are usually incorrect in their prognosis, nearly always tending to believe that their patients will live longer than they actually do.

Harvard Medical School professor Jerome Groopman, a leading cancer and AIDS researcher, says that when he is really pressed, he will provide a likely timeline. But he adds, “You want to partner with (your patients), not be the presiding judge handing down a death sentence.”

End-of-life conversations between patients, families and the doctor require quiet time, in the clinic or the hospital, time found amid good days and bad days of chemotherapy, congestive heart failure treatment or progressive dementia. The right day for the conversation often never seems to come.

Many doctors, especially those trained more than a decade or two ago, have had no guidance on when and how to talk with patients about the end of life. We were trained only to prolong life, not help in its end. Our focus has been on quantity of life, not quality of life.

Patients also avoid the topic. In a 2005 AARP survey of Massachusetts residents over age 50, nearly 90 percent said they wanted honest answers from doctors, but fewer than 20 percent had discussed their end-of-life wishes with their physicians.

How do we overcome this twofold barrier? How can we encourage doctors to initiate the conversation, and patients and their families to ask for the conversation?

Trust is the fundamental basis of the doctor-patient relationship. The patient must trust the doctor and the plan of treatment — or lack of treatment.

Time to reflect

Conversations this important require time to reflect on the trajectory of treatment and the patient’s quality of life. Such conversations are best held in a noncrisis situation, before an ICU admission or emergency surgery.

The doctor can begin by saying something like: “I know this has been hard, but I want to take the time and discuss what your wishes are if the heart failure does not respond to stronger medications.”

Patients can also initiate the conversation with, “I know things are not going well with the treatment and I want to talk about some of my options for end-of-life care that would not involve more aggressive medicines or surgery.”

The Tennessee Department of Health website (health.state.tn.us/advancedirectives) and most hospitals provide a form for physician orders for scope of treatment, also known as the POST form. It is completed by health care professionals and provides a doctor’s order about a patient’s wishes.

For example, POST forms document if you do not wish to receive CPR, antibiotics or medically administered fluids and nutrition.

The POST form records the conversation between doctor and patient, just as an advance care plan (or living will) form records the conversation among families.

Stating your wishes does not mean the end of care. New areas of medical care, including palliative care, are focused on helping patients, families and doctors navigate the end of life in comfort and peace.

As doctors, we always hope to make the best decisions for our patients. In looking back over the care we’ve chosen for our patients, we don’t often question our choice of antibiotic or a surgical technique, but we do wish we had spent more time talking to them about planning for the end of life, before the end of life.

Manoj Jain is a Tennessee doctor who writes for The Washington Post. Bill Frist is a heart transplant surgeon and former U.S. Senate majority leader.



This article was originally featured in The Tennessean http://www.tennessean.com/apps/pbcs.dll/article?AID=2013310060057

It’s never too early to discuss your final wishes

(The Tennessean, September 22, 2013)

By Manoj Jain, M.D. and Sen. Bill Frist, M.D.

A week before my (Dr. Jain) elderly parents came for a long visit, I asked them if they would be willing to have a conversation about end-of-life planning. But it wasn’t until the day before they left that we sat at the dining table with documents I had printed from the Tennessee Health Department website.

Too often among family, such end-of-life conversations do not occur. Studies show that 60 percent of people say they do not want to burden their families with difficult end-of-life decisions. More than 80 percent of people agree that it is important to have end-of-life instructions in writing. Yet less than 25 percent of people have followed through with written directions to ease the burden on their family members.

Why do we not have this crucial conversation? Talking about end of life is certainly uncomfortable. Yet, there may be an even greater fear. Talking about death may be akin to opening Pandora’s box, or being perceived as someone who is encouraging or wishing for our loved one to die.

But by having a conversation about death, we are not inviting or encouraging death for our loved ones, we are profoundly affecting how the end of life will be experienced by everyone involved — both the individual whose wishes are to be respected, and all of the family members who carry their memory forever.

I (Jain) feared that my parents might misunderstand my intentions. As we sat at the dining table, I broke the ice by talking about the death of my grandfather at 93, and how he was clear in his wishes not to go to die in a hospital. My father then told me how he spent the final day and hours with his father, sitting with him. As our conversation went on, I realized that my parents, too, had desired to have an end-of-life conversation.

Whether you are concerned about an elder family member, or preparing to share your own end-of-life wishes, there are resources and tips to make the conversation easier.

Starting the conversation

Approach the topic directly and gently. Start the conversation with plenty of time, on common ground, perhaps by discussing a shared experience. Confirm your desire for a family member’s wishes to be honored, for their dignity to be preserved.

The Tennessee Department of Health provides further guidance for this conversation in its “Five Wishes” resource. More than 18 million “Five Wishes” packets have been distributed.

A structured document called an advance-care plan, or living will, can help guide the conversation. While it is a legal document reflecting our wishes, an attorney is not required to draft it or sign it. In Tennessee, advance-care plans are available online: http://health.state.tn.us/advancedirectives/.

An advance-care plan requires three major decisions. First, an individual must name an agent. A health care agent is a person who will make health care decisions for you. You can make this effective at any time. An agent is usually a trusted friend or relative who you feel will make the best decisions on your behalf.

Next, an individual must determine how he or she defines quality of life in the final days. You decide which conditions are acceptable to you: permanent unconsciousness, such as in a coma; permanent confusion, like end-stage dementia; or dependency for activities of daily living. These are not easy decisions, and over time your opinions may change. Having a frank and thoughtful conversation about your wishes will empower your family if any of those situations arise.

Treatments and Interventions

Finally, individuals must decide which treatments and interventions they would like to take advantage of. At the end of your life, do you wish to receive CPR? Life support? Surgery? Tube feedings? Advance-care plans offer explanations and definitions of each option. If you have questions, your local doctor or nurse can help.

The final product — a two-page document — will be notarized or signed by two witnesses. Then copies should be shared with your physician, your health care agent and close relatives.

Culturally, it is hard for us to talk about and prepare for death, but taking the time to prepare now will be invaluable for you and your family later. Conversations about end of life do not need to be single, marathon affairs. Express your wishes, do your research, discuss again as circumstances change. It is never too early to agree together to a plan, but it could be too late.


Dr. Manoj Jain is a Tennessee doctor who writes for The Washington Post. Dr. Bill Frist is a heart transplant surgeon and former U.S. Senate majority leader.

This article was originally featured in The Tennessean http://www.tennessean.com/apps/pbcs.dll/article?AID=2013309220100

Cost Sustainability

(Modern Healthcare, May 18, 2013)

By Bill Frist and Dr. Manoj Jain

We have done it. We have decreased the increase in the cost of healthcare. Let us explain. For three decades (1980–2009), the cost of healthcare has been increasing each year at an average rate of 7.4%—double the rate of inflation. However, over the past three years, the increase in healthcare expenditures has remained at a low 3.1%.

Is this decline the desperately needed bend in the healthcare cost curve or just the impact of the depressed economy?

Four leading studies point us in different directions. Last month’s Kaiser Family Foundation study deduced that 77% of the decline was attributable to the economic downturn and is likely temporary. A report by the Robert Wood Johnson Foundation echoed these conclusions.

In contrast, two articles in the May issue of Health Affairs point to structural changes such as “less rapid development of imaging technology and new pharmaceuticals, increased patient cost sharing and greater provider efficiency” as major causes of the decline, suggesting that only 40% to 55% of the decline was because of the economic downturn.

The final answer is probably somewhere in between, with about half of the decrease realized by encouraging changes in the way healthcare is delivered and the other half due simply to the downturn in our economy. Regardless, it is important to recognize—and celebrate—that the cost curve has bent without collapsing our healthcare system or being prompted by draconian measures in rationing of healthcare. Moreover, the decline has not led to deterioration in our quality measures. In fact, they have improved.

Now, the $2.7 trillion question is, “How can we sustain this slower growth over the next decades?”

Undeniably, during the past several years, the singular focus of conversation among policy makers has shifted from simply more care and better quality of care to better value in healthcare, where value is defined as quality over cost. The onset of value-based purchasing by Medicare and higher copays and deductibles for patients in employer-based plans has helped in disseminating this message to doctors and patients.

Yet if history is any indicator, the cost of healthcare will rise once again as our economy strengthens. So, last month the Bipartisan Policy Center made 50 bold recommendations on how to sustain the lower growth of healthcare costs. These recommendations are unique because they focus on improving the entire system of care over a prolonged period of time and break through the partisan rhetoric surrounding healthcare reform.

We want to highlight a few of the recommendations that will impact providers—hospitals and doctors. The BPC encourages advancing accountable care organizations to a 2.0 version where the entire spectrum of patients’ needs would be covered for a fixed payment, and in doing so replace the irrational and outdated sustainable growth-rate formula for physician reimbursement.

Also, the BPC policy paper suggests changing our present voluntary bundle payments program to the standard method of payments for certain DRGs. The impact of such a change in the payment system can be profound. When in the 1980’s Medicare changed payments to hospitals by DRG, length of stay and hospital payments declined.

If such measures are not successful in restricting the cost of healthcare, then a fallback spending limit or a “cap” would take effect based on annual per beneficiary spending growth to a target of GDP.

To sustain these reductions in cost, the availability of current cost data and transparency of such data are essential. At present when patients get their bills, they do not know the difference between healthcare charges, expenditures and costs. To borrow an analogy from car sales: the sticker price, the new owner’s price and the dealer’s invoice price, respectively.

As for providers, physicians are often unaware whether an antibiotic costs $150 or $15 when writing the prescription or a doctor’s order in the hospital chart.

These costs have real impact for Americans. One RAND Corp. study found that if healthcare costs had risen at the slower rate equal to the Consumer Price Index, an average American family would have had an additional $5,400 more to spend each year on education, entertainment, food and clothing over the past decade. But instead, the average family has spent that money on healthcare. With our healthcare system at this crucial crossroads, we need to take this opportunity and stop the collateral damage.

A slower growth of healthcare cost would mean less burden on the individual family, freeing that family to invest in and live a higher quality of life. And for communities it would free billions of dollars for education, businesses, job creation and future innovation.

The good news is that it can be done. And the blueprint for eliminating waste, lowering the cost and maximizing the value is actively being considered by voices that rise above partisan bickering.

Manoj Jain is an infectious disease specialist in Memphis, Tenn.
Bill Frist is a heart transplant surgeon and former U.S. Senate majority leader.

This article was originally published in Modern Healthcare.