In Good Hands
Comfort, Care and Dignity in the Last Days

By Tracey Edgerly Meloni

The Colonel, who carried out his final days under the
care of hospice, spent much of his life’s end with his
children and grandchildren, pictured here.

The Colonel lingered over coffee, gaunt face mutinous, unsteady fingers working his daily crossword puzzle—in ink. Morning sun reflected off dusty photographs of Meg, his devoted wife of 50 years, laughing through the decades. Other framed images captured him as a dashing World War II officer, father of two brides, tennis champion and vigorous marathoner.

For half a century the Colonel ruled his household with the same authority that directed his military campaigns. Toward the end of his life, nothing—neither Meg’s death nor the grim diagnosis of terminal cancer—could diminish his determination to stay in command. Welcome to a diorama of denial.

By 2005, when he was 86, the Colonel’s daughters, Margaret and Mary, were growing increasingly alarmed by incidents connected to their father’s aging. Multiple fender benders, 911 calls and forgotten bill payments had made it clear that his independence was a thing of the past. Confrontation, however, resulted in fights, and he refused assisted living. Trial stays at each daughter’s home had proved disastrous. Worse, his physicians always reluctantly released him from care facilities—there was nothing more to be done in terms of treatments.

The Colonel fathered two daughters, both of whom
later served as witnesses to his battle with
terminal cancer.

Although he wouldn’t admit it, an advancing phalanx of disease and decline had taken hold. The Colonel required serious pain relief and end-of-life solace, a chance to conclude his journey as he has lived it all his life: with dignity.

One particular sunny Saturday morning, Margaret and Mary, exhausted from caregiver shifts, brought in the Colonel’s trusted physician, as well as hospice volunteer and longtime friend Patrick. The Colonel reacted violently. “My own daughters will not hand me over to the angels of death!” he shouted. “I never lose, and I will beat this bastard.” Variations on this theme occur everywhere, every day. Dutiful offspring switch roles with parents, hoping to choose safe, comfortable and dignified paths for those who raised them as life approaches its inevitable conclusion.

One option of increasing popularity is that of hospice care. Susan Warinner Hogg, executive director of Virginia Association for Hospices and 25-year devoted advocate of the hospice philosophy, stated the goal clearly. Hospice seeks “to allow patients to spend their last months free of physical, emotional and spiritual pain surrounded by those who care deeply for them.” Hospice tenets maintain “you matter until the last moment of your life,” and hospice employees work to make each precious hour count. For loved ones left behind, hospice also eases the grieving process with time—proven succor and support.

The hallmark of hospice care is that it comes to the patient. “We know most people would prefer to remain in comfortable and familiar surroundings among friends and loved ones,” said Spencer Levine, director of communications at Capital Hospice of the Metro region. According to Levine, the “vast majority” of the 815 patients Capital Hospice attends to on any given day receive care in their own home or apartment.

Hogg said hospice programs will serve a patient wherever he or she calls home, “(even) under a bridge.” And while it’s never too early to think about hospice care, she added that patients only qualify for it when they are considering ceasing curative care, and when a physician has certified that, should the disease run its expected course untreated, the patient’s life expectancy is six months or less.

In Northern Virginia, residents have the right to expect much of hospice care. According to Levine, Capital Hospice is in the vanguard, offering comprehensive services to provide the highest quality end-of-life care to people of any age, including infants. Arrangements can be made for those who have no caregivers, no income, no home, no insurance and no money.

Like the Colonel, many view hospice care as the ultimate surrender, feeling that they are being abandoned on the battlefield of life. “There is no getting around the fact that hospice is designed to offer comfort rather than cure,” Hogg said. She added, though, that “finding a quality of life and relief from distressing symptoms can be viewed as a sort of cure. In fact, many a hospice patient has lived far longer than anticipated due to an increased level of comfort.” And, she was quick to point out, if a cure were to present itself, the patient has every right to discharge from the hospice program to pursue the cure and can readmit at any time when the focus returns to comfort and symptom management.

When should hospice care become a consideration? Levine spelled it out: “When an individual with a serious, progressive illness no longer derives any benefit from curative treatment, or any benefit from their treatment is outweighed by side effects such as discomfort or pain that reduce their quality of life.”

Levine recommended contacting hospice if any of the following is true: The patient is unintentionally losing weight, unable to care for himself or herself, makes frequent trips to the emergency room, seems to be declining physically or mentally, “and/or their caregiver is exhausted.” He said hospice advises physicians to recommend hospice care “when they would not be surprised if their patient would be gone at the same time next year.”

Capital Hospice staffers run a free
summertime weekend camp for
grieving surviviors.

Hogg took it a step further. Ideally, she said, people should look into hospice care “when they are perfectly healthy. If we could get every American to have a talk about issues such as are included in a thorough advanced directive, we’d likely break down a large amount of the barrier to people getting hospice care when the time comes.”

What is the biggest mistake loved ones make in the case of a dying person? Philip Carpenter, director of family services and community outreach at Capital Hospice, pulls no punches. “Overestimating how much time their loved one has left,” he said. “It’s difficult to move away from the idea that Dad’s surely going to bounce back—he always has. But holding out for a miracle can delay important decisions and sometimes result in important discussions never occurring.”

Paula Ropelewski, program services director at Hospice of Virginia, urged family members to “work as a family unit in helping your loved one have as peaceful a death as possible—this is about them, not about you.” She added a poignant thought: “Don’t wait another moment to say I love you.”

While actual hospice costs vary with patients and circumstances, “people are surprised to learn that insurance often covers not only hospice services, but medications related to the terminal illness,” Levine said. The gold standard for such coverage, he continued, is the Medicare Hospice Benefit, enacted 25 years ago.

In Virginia, Hogg explained, hospice is a mandated benefit. Medicare and Medicaid both cover 100 percent of hospice care costs, while private insurers have to at least cover them to a degree. Nearly a year has now passed since the Colonel first went into hospice care. He died peacefully, surrounded by his family just before Father’s Day. His daughter Margaret charted the course she and her sister followed. “Before hospice, we’d all been clinging to a small raft in the midst of the ocean, wondering when the end would finally engulf us. Suddenly we found ourselves pulled safely to an unexpected shore. We were still afraid and sad as we faced Dad’s death. But hospice helped us believe that there really was a kinder and more life-affirming way toward the end, and that we’d have companionship on that better path.”

Levine said he does his best to lay anxiety to rest in the minds of those considering hospice. “Hospice care is very highly regulated, so in most cases the choice of providers becomes more of a personal preference, such as non-profit versus for-profit, locally based versus a national chain, new versus established. Does the hospice offer services you seek or anticipate needing? Does the hospice accept your insurance or provide care if you don’t have insurance?

“In the same way that a person can opt out of hospice care if they choose, a person can change hospice care providers if they feel they have made the wrong choice.”

To find hospice services near you, call the Virginia Association for Hospices at 804-740-1344, or the National Hospice and Palliative Care Organization at 800-658-8898. Seek information via the Internet at: www.virginiahospices.org and www.nhpco.org. Find out more about Capital Hospice serving Northern Virginia, Washington, D.C., and Prince George’s County, Md., at 800-869-2136 or capitalhospice.org.

About the House
What to Ask When Choosing the Right Hospice Facility for Your Family

• Accreditation Is the agency accredited by a recognized body, such as The Joint Commission on Accreditation of Healthcare Organizations?
• Certification Is the hospice in question a Medicare-certified organization?
• Licencer Is the program licensed by the state?
• Consumer Info Are there written statements concerning eligibility, costs, services and liability insurance?
• References Is the agency able to provide references from hospitals, social workers and others who are familiar with its services?
• Plan of Care How professional/individual is the plan of care?
• Evaluation Where is the evaluation conducted?
• Costs Is everything in writing?
• Questions Who/when can you call? Is there 24-hour support?
• Services How quickly can they initiate services? What are the geographic boundaries? Are there dieticians, physical therapists, rehabilitation therapists, family counselors?
• Inpatient Care What happens if a patient can no longer stay at home? Can you tour the inpatient facility? What hospitals contract with the facility for inpatient care?
• Patient's Rights Ask to see a copy of the agency’s patient’s rights and responsibilities statutes.

(May 2008)