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

How do you want to die?

(The Week, Sept 11, 2012)

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.


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.


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.


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.

This article was originally featured in The Week http://theweek.com/article/index/233111/how-do-you-want-to-die