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Dying at home, surrounded by family

By Madison Park, CNN
Elizabeth Edwards chose to spend her last days at home surrounded by her family, rather than at a hospital.
Elizabeth Edwards chose to spend her last days at home surrounded by her family, rather than at a hospital.
  • Next to love and life, there isn't a more critical and personal decision than how to die
  • Elizabeth Edwards chose to die at home, surrounded by her family in North Carolina
  • Hospice care can provide pain relief, social work, chaplain, acupuncture tailored to need

(CNN) -- Elizabeth Edwards died Tuesday, after doctors had told her further cancer treatment would be "unproductive." She was at home, surrounded by people who loved her.

Next to picking a life partner or becoming a parent, there isn't a more personal decision than how to die for those who get the opportunity to choose.

When the limits of modern medicine are reached, it's a heavy consideration for terminally ill patients. For some, making the conscious decision to end treatment is tantamount to giving up or giving in. They worry about disappointing the people who care about them.

But one end-of-life expert sees it differently, noting that a growing number of patients are choosing hospice, so they can be made comfortable in familiar surroundings with family and friends close by.

Elizabeth Edwards dies at 61

"People in hospice don't want to die. They want to live, and they want to live well," said Dr. David Casarett, associate professor of medicine at the University of Pennsylvania. "They want to use whatever time they have to live the best way they can. I don't think it's giving up. It's making a careful choice."

Hospice care relieves pain and addresses social, psychological and spiritual needs of terminally ill patients. They can receive services such as acupuncture, pain relief, social work and access to a chaplain, depending on each patient's needs. Hospice care does not try to cure the disease. It instead aims to make patients' lives comfortable.

"The easiest thing is to go after treatment after treatment, and say yes to whatever gets offered next," Casarett said. "The bravest thing is asking yourself what's important, who's important, what's best for you and your family and choosing hospice that way.

"It's about how they want to spend time. It's not a death wish. They get as much enjoyment every day, and they're hopeful they wake up tomorrow as the person with the most aggressive treatment."

People who turn to hospice generally do so after learning from their physician that there are no more helpful treatment options.

To people who have battled terminal illness for years, going home and stopping treatment can be a sad decision, but it can also bring relief.

"We all know, at a certain time, our days are numbered," said Donald Schumacher, president and CEO of the National Hospice and Palliative Care Organization. " When you're hanging on for a cure, and you receive that news, it can be sad and difficult to accept. If you've been living in pain for years in difficulty, the comfort they get from hospice is an incredible relief."

Even in death, most people aren't worried about themselves.

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"Their No. 1 concern is not for themselves, but for loved ones," said Dr. Joan Teno, professor of community health at Brown University, who researches end-of-life care. "It's an important time with family. ... They honor and tell the loved one what important role they played in life and also bear witness to that."

According to a study published in the August edition of the New England Journal of Medicine, patients in such palliative care had better quality of life and fewer depressive symptoms than patients receiving standard care.

Vailia Dennis, 91, who lives near San Diego, California, chose hospice care over receiving a heart surgery nearly seven years ago. She refused to get surgery to fix a heart condition that will eventually harden her aorta.

"I have seen people -- especially the elderly -- don't come out being the same person after an operation," she said. "They stay in bed till they die. I said, 'No I'm not going to do that. I'm not going to jeopardize whatever time I have left by having an operation.' "

Dennis lives at home and has outlived all doctor's expectations. They estimated she would live less than six months without the surgery.

"From the time I got sick, it's been a world of pleasure, comfort and delight, it's a whole different world. I can be me, not somebody else," Dennis said, who gets her care from the San Diego Hospice and The Institute for Palliative Medicine.

She feels daily pains and aches, but she enjoys strong connection with her family and friends.

"We need to understand, always, we have nothing left to prove," she said about her family showing love for her. "My son, precious son, has called me every morning for six and a half years to make sure mama's all right."

Dennis doesn't know why she has outlived all medical estimates, but offers this theory:

"I accidentally picked up a book of philosophers. I got to (Benedict) Spinoza," she said. "Spinoza said God is love, we're all parts of God, that love is the most important thing we have in the world, the most successful thing.

"And he went on to say that so for whoever loves their fellow man will never know the pain of death. That's important to me. It's sincere and real."