Tragic story inspired Engage With Grace
Like all movements, Engage With Grace started with a story – in this case, a very tragic story. In 2004, at age 32, Rosario Vandenberg fell ill and was subsequently diagnosed with a malignant brain tumor. Following the diagnosis, Vandenberg, a career pharmacist and the mother of a two-year-old daughter, lived only seven short months. Her family watched helplessly as the cancer took its toll, and after two months in the hospital, doctors said that Za, as Rosario’s family knew her, didn’t have long to live.

Vandenberg’s sister-in-law, Alexandra Drane, recalls: “When the end was near, the doctors pulled us aside and advised us of the options available. They strongly suggested we keep her in the hospital to make sure she would be well cared for – worrying that her case was so complex, there was no way we could care for her at home,” said Drane. The family, however, did not agree.

Antonio Drane, Alexandra’s husband and Za’s brother, told the doctors in no uncertain terms that the family would take their beloved Za home to die in their midst. Although the family had never discussed with Za what they should do in this situation, Antonio believed she would have wanted to be at home.

The night the family brought Za home, in what seemed like an affirmation of their decision, Alessia, Za’s daughter, snuggled next to her mother in bed. In the unfamiliar and foreboding hospital environment, Alessia had been afraid to lie on the bed or even touch her mother. Now, not only was the child happy to be close to her mother, but even more astonishing, Za – who’d been in a coma for a week – opened her eyes and looked lovingly at the child next to her.

The very next night, Za died peacefully.

Turning sorrow into action
As a result of that experience and a series of synchronistic events that followed, Alexandra Drane, president of health-care communications company Eliza Corp., teamed with medical blogger Matthew Holt to form the nonprofit organization Engage With Grace.

Drane and Holt launched a website, called “Engage with Grace: The One-Slide Project,” aimed at making one of life’s most difficult discussions easier by boiling it down to five talking points on a single, easily e-mailed and linked slide that can be shared in all kinds of circumstances, including family dinners. That was in the summer of 2008. Last fall, Engage With Grace launched a coordinated “blog rally” aimed at getting families to talk about death during the Thanksgiving holiday.

Although some families or individual family members may be reluctant to venture into such an emotional discussion at a holiday gathering, Thanksgiving is rooted in strong family traditions, and it may be one of the rare times during the year when families actually sit down for a meal together. Ronald Kessler, a sociologist at Harvard Medical School, puts it this way: “Although it can be uncomfortable to discuss this topic over the dinner table when posed as a hypothetical, this discomfort pales in comparison to the anguish families go through when they have to grapple with the realities of end-of-life decision-making. As a result, the discomfort is likely to be a price well paid.”

End-of-life wishes don’t match reality
The signature offering of the Engage With Grace is the downloadable One-Slide Presentation. On the slide are five questions designed to start the conversation and clarify the wishes of family members regarding their own end-of-life care. Engage With Grace also offers many other resources, including several statistics that help to explain why end-of-life care should not be left to chance, such as:

73% of Americans would prefer to die at home, but anywhere between 20-50% of Americans die in hospital settings.

While more than 80% of Californians say their loved ones “know exactly” or have a “good idea” of what their wishes would be if they were in a persistent coma, only 50% say they’ve actually talked to their families about their preferences.

80% say it is “very” or “somewhat” important to write down end-of-life wishes, but only 36% have actually written out their instructions.

As more families have “the conversation” and more people make their wishes known, the discrepancies in these statistics will narrow. And Engage With Grace will fulfill its purpose: for everyone, as far as possible, to be able to meet death on his or her own terms.

End-of-life discussions benefit patients and caregivers
A study of 332 terminally ill cancer patients at the Dana-Farber Cancer Institute revealed that patients who said they did not discuss end-of-life issues received more aggressive medical care in their final week of life.

Such aggressive treatment was linked to lower quality of life for the patients and their caregivers, who also experienced feelings of regret and an increased risk of depression. Those who reported engaging in end-of-life discussions, on the other hand, were more likely to receive hospice services, and their loved ones reported a better quality of life during bereavement.

Doctor-patient discussions result in less aggressive treatment, lower costs
Meanwhile, the March 9 issue of the Archives of Internal Medicine included a report on a study of 603 terminally ill cancer patients, which was funded by the National Institute of Mental Health and the National Cancer Institute as part of the ongoing Coping With Cancer study.

According to the report, when doctors and patients talked about whether treatment should focus on prolonging life or controlling symptoms, patients were more likely to die at home and spend less time pursuing aggressive treatments. Researchers say these patients had a better quality of life and survived as long as those who did not discuss end-of-life options with their physicians.

The benefits of open communication between doctors and their dying patients include not only physical and emotional comfort, but also cost savings. The cost of providing health care in the last week of life was 36 percent lower for patients who reported having end-of-life discussions with their doctors, and researchers estimate that more than $76 million could be saved annually if just half of the people who die from cancer each year had those discussions with their physicians.

In Izzy and Lenore, Katz tells the story of his simple life on Bedlam Farm in upstate New York. The story revolves around Katz’s love for his growing menagerie of farm animals – particularly his dogs, whose distinct and colorful personalities come alive in Katz’s writing – and the love they returned to him. And yes, it’s a story about loss and grief; but most of all, Izzy and Lenore is a story of the amazing power of animals to comfort and heal.

Being a hospice volunteer is a noble calling, but it’s not for everyone. Many people shy away from even considering taking on such a mission, convinced that frequent contact with illness, death, and grief would be too depressing to bear. That’s what Katz’s friends and family told him when he announced his plan to join the local hospice team and provide comfort and support to terminally ill patients and their families during the final stage of life.

Finding redemption in helping others
What his family didn’t realize was that Katz – a prolific writer who has penned a book a year since 1990 while serving as a regular contributor to publications like Slashdot, Wired and Rolling Stone – was already sinking into a crippling depression. In fact, one of the reasons Katz wanted to volunteer with hospice was his hope that reaching out to help others would help to lift him from sadness and self-absorption.

The depression settled in after Katz was diagnosed with diabetes, during a particularly long and harsh winter on the farm. A social worker Katz met at one of his book readings had talked to him about the need for hospice volunteers and suggested that it might be possible to bring his dogs into service as well. “I was drawn to hospice work because I wanted to do something with my dogs that was more meaningful than some of the traditional dog-human activities, like sheepherding or even conventional therapy work,” Katz says.

When Katz expressed his desire to have his border collie, Izzy, join him in service as a hospice volunteer, hospice officials met his request with enthusiasm tempered by a dash of caution. Both Katz and Izzy took part in rigorous training exercises to make sure they had the temperament to succeed as hospice volunteers.

Unconditional love and devotion
One of the most moving themes in Izzy and Lenore is Izzy’s remarkable ability to sense a patient’s mood and needs and respond accordingly. When a patient died, for example, Izzy instinctively transferred her attention from the deceased to the grieving family. In time, Katz’s affectionate Labrador, Lenore, also joined the hospice volunteer team, and the two dogs brought love and comfort to every hospice patient and family they visited.

Whether Katz recovered from his depression because of his hospice work or because of the unconditional love he received from his animals, one thing is clear throughout the story: everyone loves Izzy and Lenore.

Hospice Not Hospital
Although the terms hospice and hospital are rooted in the same Latin word meaning “guest house” or “hospitality,” a hospice is not the same as a hospital. A hospital is a place where sick people go to get well; hospice is a philosophy of care that involves helping terminally ill patients to live the best life they can live for as much time as they have, and giving them the opportunity to die well when the time comes.

Thirty years ago, the hospice movement was in its fledgling stages in the U.S. and virtually unknown among the general public. Today, 1.3 million people are receiving hospice care, most of them in the comfort of their own homes. Hospice professionals and volunteers not only provide pain and symptom control for patients in the end stages of life, but also spiritual counseling, emotional support and practical assistance for patients and their families.

Evaluating Hospice Services
When it comes to choosing hospice care, Bachrach compares the process to finding a college for a high school student – something most folks wouldn’t wait until the last minute to do. Here are some of her suggestions on how to choose the best hospice:

• Visit hospices while you’re healthy. Even if you live for many years, you’ll never know when a parent, sibling or spouse might need hospice services, and when that time comes, your preparation will be invaluable.
• Ask questions. Find out about staffing. Is weekend coverage a problem? How many nurses and volunteers are on call? What is the staff-to-patient ratio? Make sure that some of the hospice’s personnel live within a reasonable distance from you. Also, talk to a few volunteers from the hospice and ask the pointed questions that concern you (for example, how’s the food?). And be sure to ask about the hospice’s bereavement care and other services for family members.
• Visit the inpatient unit. Although odds are that you or your loved one won’t spend any time there, the cleanliness and comfort of the facility may be indicators of the hospice’s overall quality and commitment to patient care.

Such is the finding of a study published in the January 2008 issue of Journal of Medical Ethics. Researchers measured how often study participants (nurses, student nurses and people with no health care backgrounds) would support a decision to allow death to progress when they were approached with the phrase “do not resuscitate” versus “allow natural death.” Nurses were likely to support the dying process regardless of what it was called, but all three groups were more likely to decline resuscitation if the words “allow natural death” were used.

To some intensive care doctors, the distinction between these three-word phrases is significant. “Do not resuscitate” carries a specific command to the attending medical team to forgo cardiopulmonary resuscitation, but allows life-saving measures up to that point. “Allow natural death,” on the other hand, suggests that doctors will limit interventions to providing comfort measures, rather than pursue more aggressive treatments that may only prolong the inevitable.

Many spiritual leaders and medical staff report that when they pose the question,  “Do you want to sign a ‘Do Not Resuscitate’ form?” families often balk because they think they are sentencing their loved one to death. But when the question is asked a different way – “Do you want to allow natural death?” – family members respond more openly as the burden of the decision is shifted in another direction.

Other professionals make the case that limiting a patient to the options implied by these two phrases oversimplifies a complicated choice. They say family members should instead be given a clear explanation of all the options and levels of care available to their loved one.

There is one thing on which most professionals can agree, however: end-of-life decisions become more crucial each advance in life-prolonging technologies and the growing list of ethical dilemmas involved in prolonging a life that can only be sustained by artificial means.

Now when you go on vacation, the last thing you expect is to come home in a casket. You pack everything you need for your trip, and you check off the items on your list as you place them in your suitcase. Toothpaste – check. Sandals – check. Sunscreen – check. Funeral pre-arrangements and legal paperwork naming your traveling companion as your personal representative in the event you are unable to speak for yourself? Probably not on your list.

If trends tell the story, it may be time to rethink that strategy. While traveling isn’t a death risk in and of itself, the fact is that none of us know when we’ll die. And dying unprepared while on vacation is not only tragic; it’s also a terrible imposition on your companion, who will have to complete tons of paperwork, cover expenses and make tough decisions at a time when they are shocked and grieving.

To ensure you’re remembered fondly long after you’re gone, consider taking steps now to save your loved ones from a logistical nightmare in the event of your untimely death away from home:

• Check with your insurance agent. If your current insurance won’t cover transportation costs to bring your body home, ask about available options.
• If you’re traveling alone, make sure someone back home knows your itinerary, and make sure that person (or your traveling companion, if you have one), has all the paperwork he or she will need to claim your body.
• Visit your local funeral director to complete a pre-need agreement before you embark on your journey. Whether you die on vacation or live for years, your loved ones will be grateful that a call to the funeral director is all it takes carry out your final wishes.