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We often avoid important conversation

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(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

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(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