Dying to Know: What Patients and Families Want to Know about End of Life Care and Issues

Posted By SHL Librarian

Presented by Kavitha Ramchandran, MD
Clinical Assistant Professor of Medicine
March 2, 2017

One of the most common questions doctors get from patients with advanced cancer or other serious illness is this:

“How much time do I have, doc? Tell it to me straight,” said Kavitha Ramchandran, MD, in a lecture at the Stanford Health Library. “People want facts and they want details.”

But all too often, they don’t get full answers. “I can’t tell you how often I talk to patients and frustrated family members,” said Dr. Ramchandran, who is medical director of palliative medicine at the Stanford Cancer Institute.

These questions are among the most difficult for doctors, said Dr. Ramchandran. There are two reasons. One is that doctors are uncomfortable admitting treatment may not help keep people alive.

The other is that sometimes doctors can’t be sure how much treatment will help—because nobody knows for sure. Medical treatments are improving so rapidly that the outlook is sometimes changing week by week, she said.

“We really have a very difficult time providing people an accurate estimation of time,” said Dr. Ramchandran. “We sometimes feel as befuddled as you do.”

For patients, having an estimate of how long they will live—and how sick they will feel—is important, Dr. Ramchandran said.

Studies show that when patients know how much time they have left, they make better decisions about what they want to do with that time, Dr. Ramchandran said. That can affect the time they spend with family. It can also affect choices about what treatment they want.

When people know they are facing a terminal illness, lots of issues come to mind, Dr. Ramchandran said. Often, people want to know what their dying process will feel like and how it may affect their families.

It’s very common for people to say, “I want to be comfortable. I don’t care what the disease looks like, I just don’t want to have pain.”

Others may focus on what treatments they want–or don’t want–if they know what their prognosis is. Patients may tell their doctors, “I want to die at home.” Others may say, “I know there are some people who don’t want everything done. But I want everything done. “And doc, what does that mean?” Dr. Ramchandran said.

Even if these are difficult conversations, talking about them can build a valuable partnership between patients and their doctors, Dr. Ramchandran said. That partnership can be important when patients must balance the trade-offs between potential value of treatment versus the quality of life.

“For you to make any decisions that are in line with your goals of care, you need to have that core information down,” Dr. Ramchandran said.

One doctor she knew had to tell her sick father that if he had a neurological procedure, he might be left paraplegic, not able to walk. When they talked it over, the father said what was most important to him is that he would still be able to watch football and eat chocolate ice cream. That made it easy to choose the procedure.

“He didn’t need to play football, and he didn’t necessarily even have to be all that ambulatory,” Dr. Ramchandran said. “He just needed to be able to relate to his family members, have good conversations, eat well. And that was good enough.”

The values that people hold for what’s most important to them can change over their lifetime. “When you’re 25, you may want to play football and swim in the bay,” Dr. Ramchandran said. “When you’re 65, you may be happy being able to have a good dinner with your friends.”

She added that people should have these conversations about what’s meaningful to them, and what gives them quality of life, with their family members. And that should be told to the doctor.

That enables the doctor to say, “I get it! I know how I can help you.” She added, “That’s what we call understanding quality of life and understanding trade-offs in a way that it’s not medical jargon anymore.”

There are two documents that patients can use to make sure their medical care decisions are followed, Dr. Ramchandran said. They are:

  • The advance directive. This is a legal document that contains a person’s wishes for medical care in case they are too sick or injured to choose. An advance directive also designates someone to make medical decisions on behalf of the patient. This document is typically placed in a doctor’s office, clinic, or hospital to guide medical staff providing care.
  • The POLST (Physician Orders for Life-Sustaining Treatment). That’s a legal document in California that lets people set limits to medical care if they are too sick or injured to communicate. This document is kept at home or carried by a patient. It binds emergency paramedics as well as doctors to follow the wishes of the patient.

The two documents are similar, but both are necessary to cover different circumstances in California, Dr. Ramchandran said. Advance directives are available to medical staff in clinics and hospitals, but they don’t apply to paramedics responding to emergency calls.

“If the paramedics came to your house and you were found down, they could not honor that legal document,” she said. “So they would still have to do CPR, they would still have to put a breathing tube in.”

If people don’t want those life-sustaining efforts, they should fill out a POLST form and keep it at home or in their wallets or purses. “We recommend carrying it in your wallet, putting it on your fridge, keeping it very visible, and telling all your family members,” Dr. Ramchandran said.

If someone does want “everything” done to sustain their life, they should not fill out a POLST form, Dr. Ramchandran said. “It’s confusing if you do it,” she said. Without it, the standard procedure is to undertake all appropriate life-sustaining procedures.
People who face serious illness have additional options to guide their medical care. One is palliative care that is dedicated to keeping them as comfortable and pain-free as possible. The other is a “death with dignity” option, with or without hospice care.

Palliative care is sometimes confused with a patient’s decision to end life early because of suffering. They are not the same, Dr. Ramchandran said.

Death with dignity is the term used for patients who choose to end their lives early by taking a prescribed drug. California is one of several states that allows this act under certain circumstances. “It’s usually unsupervised, and it has to be with the ability to take it on your own,” Dr. Ramchandran said.

Palliative sedation is provided when a person decides their priority is to control pain. In some cases, the patient may decide that pain control is their highest priority, even if it means their life ends early. But their goal is not to end life.

Many people who receive palliative care also pursue full treatment and recover to live well, Dr. Ramchandran said.

In fact, many studies have found that palliative care improves quality of life so much that people may live longer than when they receive only advanced treatments that cost much more. “People feel better, they have decreased symptoms of anxiety, depression, and pain that also transfers to family members,” Dr. Ramchandran said.

People can pursue the best care possible by combining palliative care and full curative care for as long as possible. Then, if they receive a prognosis that they may not live more than 6 months longer, they can choose hospice care. Hospice provides care at home that focuses on relieving pain and managing symptoms.

“Pain is one of the things that people are most terrified of,” Dr. Ramchandran said. “I’m thankful that 80 to 90 percent of the time you can control pain.”

For people who move to the last stages of dying, their end of life can’t always be predicted, Dr. Ramchandran said. “It doesn’t always happen with the people that you want,” she said. “It can be messy, and it’s not always exactly as we plan.”

But people who are facing a terminal illness can find the courage to accept those risks, and embrace the time they have left. Dr. Ramchandran showed a photo of two people who had late-stage cancer, smiling while they danced with abandon at home. She repeated a quote popularized by the author Vivian Greene to sum up their spirit:

“Life isn’t about waiting for the storm to pass,” Dr. Ramchandran said. “It’s about learning to dance in the rain.”

For more information:

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Palliative Medicine Clinic at Stanford Cancer Center