Families should talk about end-of-life care early, experts say

Experts say patients' wishes should come first

By JEN CHRISTENSEN, CNN
iStock/ tepic

(CNN) - Sen. John McCain and his family have made the difficult decision to discontinue treatment for McCain's terminal brain cancer. Legendary singer Aretha Franklin also decided to discontinue treatment toward the end of her life. How patients and families do this kind of risk-benefit analysis about end-of-life decisions involves a complicated and emotional conversation that experts say you should have as early as possible when someone is seriously ill.

Oncologist Dr. Otis Brawley said he still finds shocking a conversation he had 30 years ago with the daughter of a terminally ill cancer patient he treated. He remembers asking the daughter whether they should stick with what he called "reasonable care" for the woman.

"When I used that term, I was thinking about comfort measures, but the daughter told me, 'Dr. Brawley, everything is reasonable,' " he recalled.

But "everything" is not always the best option, said Brawley, the chief medical and scientific officer for the American Cancer Society.

"Then what typically happens is, you end up with a patient on a ventilator, in intensive care, with all kinds of drugs to support their blood pressure and other body functions," Brawley said. "The quality of that person's life for their final days is absolutely awful."

Doctors are under no legal obligation to help you with these questions, but there is a general consensus, according to the American Medical Association, that doctors should have conversations with patients and their families about quality of life using various treatments and should be truthful about if there are no treatment options left.

"Frankly, these conversations do not happen enough in this country," Brawley said. Death is a difficult subject, and emotions run high. "Sometimes, people don't want to give up, or they don't want to accept that they are dying. I find it's often the families more so than the patient hanging on to false hope, and sometimes the doctors gain a tremendous attachment to their patient and don't want to admit the patient is dying and that they can't do much more for the patient, but we should be honest with people first and foremost."

In the ideal world in that circumstance, Brawley said, a patient should go into hospice care. Such treatment is available when a patient is likely to be within six months of death and when a curative treatment is no longer possible.

Hospice is a team approach to the end of life. The care team provides medical care and pain management, but the team also helps with the non-medical needs that come with the end of life, like emotional and spiritual support.

"It is difficult to hear that someone is discontinuing treatment and a wave of sadness is going over Facebook, but hospice is not giving up," said Edo Banach, president and CEO of the nonprofit National Hospice and Palliative Care Organization. "The reality is, people who chose hospice often live longer, and it's more of a holistic kind of care that provides social work and chaplaincy and support for the family and all those additional things that the hospital system doesn't really provide."

They key, Banach said, is to have the conversation early about how someone wants their end of life to be, long before their illness becomes serious. If someone has cancer, talk about not just whether they want chemo but what their spiritual needs are, what their charitable and social needs are. All of that should be factored into the equation of what to do next.

"That can be complicated, and you don't want to have a rushed conversation when there is a crisis," Banach said. "Because if you do, often what will happen is, daughter number one will want one thing to happen, and daughter number two wants something else, and it becomes a moment of crisis that could have been avoided had someone talked about it earlier."

Banach said it's also essential to put the patient's wishes first.

"What gets fought over when that doesn't happen is a tragic waste of time," he said. "And when we put Mom or Dad or whatever person is at the end of their life, putting them first is key, because it's their dignity that's at stake."

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