Care for the dying

National Hospice and Palliative Care Organization

1-800-658-8898

Centers for Medicare & Medicaid Services

1-800-633-4227

Visiting Nurse Associations of America

1-202-384-1420

Department of Veterans Affairs

1-877-222-8387

Center to Advance Palliative Care

1-212-201-2670

To learn more about advance directives and living wills:

American Bar Association

1-800-285-2221

Caring Connection (National Hospice and Palliative Care Organization)

1-800-658-8898

Medlineplus.gov

www.medlineplus.gov, click on Advance Directives

National Cancer Institute

1-800-422-6237

Questions to ask to help determine care options:

How long is the loved one expected to live?

What kind of end-of-life care is needed?

Is the most likely caregiver able to provide that kind of care?

Where would dying loved one want to have this end-of-life care? In a facility or at home?

What is the best place to get that type of care he or she wants?

Who will pay for the care?

Can family, friends and pets visit whenever they want?

Is there a good chance treatment in an intensive care unit will reverse the dying process or extend it?

Source: U.S. Department of Health and Human Services

These were the sorts of situations that made them think there had to be a better way to die and, maybe, even to be better nurses.

"I always refer back to one of my first deaths, " Shannon Collins said recently.

One of her patients, a middle-aged woman who had suffered a stroke, had stated in her will that she did not want to be artificially fed.

Her husband, however, insisted. And her son and daughter went back and forth between the two.

They cried. They fought. The daughter surrendered and the husband finally decided to respect his wife's wishes.

"I felt like there were things we could do better, " Collins said.

Witnessing such struggles made Collins want to work in hospice full time. She gave up her job at a local hospital and went to work at a local hospice, helping patients and their families with end-of-life decisions.

Then about five years later, Collins and Michelle Ross, both 38, decided they could do an even better job than the hospice they'd joined and for a year researched the market to see where they should land. Research showed that there was only one in-patient hospice in Cobb County at that time and ample room for one more.

So in 2003, the nurses struck out on their own and, along with Cynthia Rivers, a 42-year-old nurse from Fayetteville, began offering home services, all the while laying ground work for their dream: an in-patient facility.

Early this year, the women opened Heritage Hospice, a 12-bed facility in Marietta, where the terminally ill come to die or receive help managing their symptoms or simply to give families a break. They also provide an array of home care services.

"We were taking care of people who were very ill, but as a nurse, there were boundaries you couldn't cross, " Collins said. "I always think of hospice as a ministry in which you're allowed to touch or to give a hug if you feel the situation calls for it."

As nurses, the women said they witnessed patients and their families suffer unnecessarily because they had not taken the time to work out an end-of-life plan.

Even in cases of serious illness, Collins said that patients often don't write living wills or designate decision-makers. And even when they do, it often isn't enough because end-of-life decisions are rarely as clear-cut as people think they will be.

"Nobody wants to talk about death and dying, " Collins said. "I think people think if they don't talk about it, it won't happen."

Jennifer Davis-Berman, a professor of social work at the University of Dayton who teaches a course on death and dying with a particular focus on hospice, said that people should talk about hospice sooner rather than later.

"Too often it's not even brought up until the family is in a crisis situation, " Davis-Berman said. "The family and the individual end up coming to hospice too late in the game and miss out on all that hospice can offer."

Although it's not always easy to determine when hospice care is needed, Ross said it's important to plan ahead.

"It doesn't have to be as complicated as creating a living will, but families should consider appointing a guardian or someone who is able to make a decision for you, " she said.

Dr. David Casarett, an assistant professor of medicine at the University of Pennsylvania, estimates that there are more than 5,000 hospices across the country that care for more than 1.3 million people every year.

The tragedy, he said, is not that patients enter hospice but that many of them enter too late to experience the benefit.

For instance, he said, half of hospice patients enroll in the last three weeks of life, a third enroll in the last week and one in 10 enroll in the last day.

"Most people would agree the people referred in the last week aren't benefiting from hospice as much as they could, " he said.

They wait, Casarett said, because they either believe hospice is strictly for dying cancer patients or they don't know about hospice and what it offers.

"There is also in the United States a culture that emphasizes aggressive lifesaving treatment, " he said.

"People don't turn to hospice until there aren't any other treatments that work."

Nurse Mary Krambis, who came to Heritage Hospice shortly after the facility opened, witnessed this when her former mother-in-law entered hospice and the woman's family couldn't accept she wasn't going to get better.

"I just kept thinking, why do we treat our dying like this?" she said.

That incident, Krambis said, led her to become a hospice nurse.

Whether families have an end-of-life plan or not, she said, "In hospice you only get one chance to do it right. It's a testament to good nursing if you can do it and do it gracefully."

Krambis recalled, for example, a young mother who came to Heritage with breast cancer because she didn't want to die at home.

"We only had a matter of hours to get everybody on board to accept it and help her let go, " she said. "I was able to explain to [her family] the dying process and what she needed and what they needed. As a nurse it's like being a guide, helping people get through what's going on and accepting it."

Collins feels good about the feedback Heritage hospice gets from clients.

Before her father's death two years ago, Paige Boyd said Heritage staff took care of her father and is now providing care for her mother at their home in Acworth.

Boyd said that as her father, who suffered for 15 years with Alzheimer's disease, got closer to the end, she knew he was going to need more assistance than she or her elderly mother could give.

"I searched the Internet and came across Heritage, " she said. "It was just such a relief when Paula [Stillwell], our nurse, walked in that first day."

Boyd described the nurse as a "wonderful calm spirit" who is always there to help her make the hard choices.

Nine months ago, Boyd decided she needed help with her mother, 87-year-old Margie Eriksen, who has dementia.

"She got to a place where aggressive medical therapy was no longer appropriate, " said Boyd, who is also a nurse.

"It's very obvious to me she's winding down. To have them help us get there is important to me."

In addition to nursing, Heritage also provides a social worker and chaplain, both of whom, Boyd said, come out once a week and pray with her mother.

"Whether she understands what's going on, it's a comfort, " she said. "All my life she was always in prayer and I know she would like that."