Taking charge: How to start the dialogue about managing your chronic illness

By nature, physicians are trained to cure, so a conversation letting a patient know their final days are nearing isn’t always easy. But it’s vital. Twenty-eight percent of Medicare dollars – about $170 billion annually – are spent during a patient’s last six months of life, often on futile treatments that lead to suffering.

That’s why many medical schools, including the Texas A&M College of Medicine, are including palliative and hospice care – which helps patients deal with the symptoms and anxieties of a chronic or serious illness – within their curriculum. While the field has grown in recent years, most health care facilities lack access to specialists trained to navigate such illnesses. The patient, even in the last months of their life, is still his/her own best advocate.

We sat down with Craig Borchardt, PhD, assistant professor in the department of humanities in medicine and president and CEO of Hospice Brazos Valley, to find out how patients can begin vital conversations about their final wishes with family members and their health care team.

Understanding the difference

First things first, it’s important to understand the distinction between palliative care and hospice care.

“Most people have heard of hospice care and have a general idea of what it is,” Borchardt said. “A Medicare benefit, hospice care is typically for terminal illness, which is defined as a prognosis of six months or less left to live.”

Generally, once enrolled in a hospice care program, which is overseen by a team of health care professionals, the care is administered in the home.

Many think hospice care and palliative care are one in the same, but they aren’t.

“All hospice care is considered palliative care, but not all palliative care is considered hospice care,” Borchardt said. “While palliative care and hospice care are both about treating the patient, not the disease, palliative care is not limited by a terminal prognosis and can be received at any time, at any stage of illness. It can even be received while the patient seeks curative treatment. “

Also known as comfort care, palliative care helps relieve symptoms associated with a chronic illness, such as cancer, cardiac disease or Alzheimer’s. The ultimate goal is to surround patients and families with resources needed to assist with decision-making and keep patients home and out of the hospital, while maintaining quality of life.

“The reason the palliative care conversation is so important is because it compels patients to ask, what is it that I want in terms of quality of life even as I’m going through curative treatment,” Borchardt said.

Start the conversation with family

The first step, and always the hardest, is to start the conversation. There is no ideal time to start talking about care wishes, but experts agree having this conversation with family earlier in the treatment can help improve the quality of care.

“The patient should be in charge of what the patient wants in terms of quality of life and treatment,” Borchardt said. “To get everyone on the same page about these wishes, it’s important to begin the decision-making and communication process early on – sometimes even before a diagnosis, if possible.”

To ease the anxiety that often accompanies such discussions, experts suggest starting out by having the conversation with a close friend first. When you are ready, think about the basics. Who do you want to talk to? Who do you trust to speak for you? When would be a good time to talk? Where would you feel comfortable talking? What do you want to be sure to say?

Remember, be patient. Some family members may need a little more time than others. Also, this should be the first of many ongoing conversations – you don’t have to cover everything, or even everyone, in one conversation.

“Talking with loved ones about your treatment wishes gives everyone a shared sense of understanding about what matters most to you.”

Continue the dialogue with your doc

After you’ve had the conversation with loved ones, the next critical step is talking to your health care team to ensure they know your preferences for care.

“Your job is not to come up with a list of treatment options; that’s their job. Your role is to help your physician understand what matters most to you.”

According to a 2012 survey by the California HealthCare Foundation, 80 percent of people say that if seriously ill, they would want to talk to their physician about end-of-life care, but only 7 percent report having had such a conversation with their doctor.

“It’s not unusual for patients to tell us that our team members are the first ones to talk honestly with them about not only their wishes for treatment options, but also the status of their conditions,” Borchardt said. “For this to happen so late in the patients’ care is sad, even tragic.”

First, it’s important to determine who among your health care providers you want to have the conversation with: your primary care physician, nurse or specialist provider for a chronic condition. Choose someone you are comfortable talking to, and someone who knows the ins and outs of your health status.

The Conversation Project, an organization that aims to help people discuss their wishes for care, suggests a series of questions designed to help patients, and families, begin the discussion with their physicians.

Questions include:

• What can I expect from this illness?
• What is my life going to look like in six months, a year from now, five years from now?
• What can I expect about my ability to function independently?

Don’t feel bad asking too many questions, there is never a “dumb question” when it comes to palliative care planning. Also, you don’t have to decide anything right away – the conversations will help lead you and loved ones into a decision you all feel comfortable with.

“Even if you are currently in good health, it’s important your care team knows your wishes, as your health status can change suddenly,” Borchardt said. “Don’t wait until there is a crisis.”

Determine when hospice care is right for you

Hospice care begins when both the patient and caregiver determine it’s the right time. Typically, hospice is reserved for the final stages of a serious illness – when the patient is no longer receiving curative treatment for the underlying disease – and is expected to have six months or less left to live.

There are often physical signs that indicate someone is ready for hospice, which can be discussed with a physician:

• Health continues to decline
• Significant weight loss
• Needing more assistance with daily living activities
• Physicians admit that there are little to no treatment options left
• Symptoms begin affecting quality of life
• Requiring more and more medication or interventions to manage the disease process

“Patients and their families should always feel comfortable discussing all available treatment options throughout the course of their illness, including hospice care,” Borchardt said.

For additional resources and helpful tips to begin palliative care conversations, visit The Conversation Project.