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




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