Don’t let patients suffer — explore range of end-of-life services

Survey shows Americans not getting the care they need

When Catherine Mullahy’s father died of Alzheimer’s disease three years ago, she learned firsthand the frustration faced by families across America when she encountered resistance among health providers as she dealt with myriad end-of-life issues.

"If I — as an experienced, professionally assertive case manager, and staunch advocate for my Dad — was met with such problems, I couldn’t help but question what was happening with other patients, their families, and the case managers who advocate for them," says Mullahy, RN, BS, CRRN, CCM, immediate past president of the Case Management Society of America (CMSA) and president of Options Unlimited, a Huntingdon, NY, case management company.

Her personal experience and those of her case management clients planted the seeds for the Little Rock, AR-based CMSA’s recent survey on end-of-life (EOL) issues.

"Despite the end-of-life resources available, I was seeing far too few patients actually able to utilize them to the fullest extent," Mullahy says.

The CMSA survey points up the problems that case managers who deal with terminally ill patients and their families confront and concluded that our nation’s medical system may be failing citizens at the end of life.

Of the 197 respondents to the CMSA survey, 105 wrote personal responses to an opportunity to share their EOL stories.

"This overwhelming outpouring alone confirmed for me and CMSA that case managers are passionate advocates for their patients throughout their lives," Mullahy says.

The results of the survey and a white paper detailing how case managers can help in EOL situations are expected to be available later this month.

Respondents in the four-week Internet survey reported that 75% of their patients receive 30 days or less of the six months of hospice care available to the terminally ill and that more than half of them spend 14 days or less in a hospice situation.

As a result, the case managers report, people are dying without the help of adequate pain management, grief counseling, legal and financial consultations, and support groups that should be available to guide them and their families through difficult times.

"Not only are late referrals to hospice care still a problem, it’s worse than it was 10 years ago. It is the fault of the health care professionals who are not doing a good job of educating people about hospice care," says Michael J. Demoratz, LSCW, CCM, PhD, president of CareMedical Systems Inc., and a case manager who often deals with the terminally ill.

Demoratz reports that many of his patients die within a week of being referred to him for EOL assistance.

"It’s beyond frustration," he says. "It’s just putting out fires."

EOL services

The CMSA survey’s findings are backed up by a 1999 survey by the National Hospice Founda-tion that showed that less than 10% of Ameri-cans know that hospice care is fully covered by Medicare, and nearly a third did not know whom they would contact about getting the best care during life’s last stages.

"Despite the fact that hospice care has been successful in America for more than two decades, one-third of Americans do not know that only hospice offers what people say they want at the end of life: choice in care, control of pain, medical attention, help for the family, spiritual and emotional support, and the option to remain in their own homes," says Stuart Lazarus, chairman of the board of the National Hospice Foundation.

One of the biggest reasons people don’t get the EOL services they should is that few people, including case managers, know what those services are, asserts B.K. Kizziar, RNC, CCM, CLP, owner of B.K. & Associates, a Southlake, TX, case management consulting firm.

"The services change almost by the day, and we have to be very vigilant to update ourselves on community resources and covered benefits through health care payers and other sources," Kizziar says.

"One of the biggest challenges I have faced as a case manager is lack of communication regarding expected outcomes from the physician to their patients. They may order hospice care but not explain to the patient/family that the disease is at the terminal point," one respondent to the CMSA Internet study wrote.

Others spoke of their frustration that physicians don’t talk with the patient and families about their advance directives before they get too sick to speak for themselves.

But even when EOL issues have been handled, families and case managers may face problems persuading the medical team to carry out the dying person’s last wishes.

Mullahy’s personal experiences mirror some of the difficulties that families of terminally ill people face.

"When my father was still mentally competent, we met with an elder-care attorney to discuss all related EOL concerns. The appropriate documents were prepared, executed, and notarized. Although copies of these documents were presented to my father’s health care team, his wishes were ignored and routinely — sometimes rudely — challenged," she recalls.

Because they are the only health care professionals who work with patients over multiple treatment settings, case managers have an opportunity to have an impact on the patient’s final days.

"Case managers are as vital to insuring a good outcome during a patient’s final illness as at any other life stage. The challenge case managers face when it comes to EOL issues is to help health care professionals, patients, and families recognize that a peaceful, dignified death is a good outcome when all other options are exhausted," says Jeanne Boling, MSN, CRRN, CDMS, CCM, CMSA executive director.

Just as case managers would routinely inquire about previous medical conditions, current medications and the patient’s understanding of the treatment plan, they should ask about EOL, Mullahy says.

Here are some suggestions for case managers on helping patients and their families in EOL situations:

  • Get involved during the admissions process when issues such as advanced directives and health care proxies are being discussed.
  • Make sure your patients all have advanced directives and other EOL documents, especially in situations where death is highly likely.
  • Ensure that members of the treatment team know and respect the wishes of your clients.
  • Examine your own feelings about death, and confront your own ideas and fears.
  • Consider if you need more education, current information, or even counseling in order to be able to advocate for your patients.
  • Help family members of your terminally ill patients tune into every resource they can draw on for support.
  • Find out what community support (such as strong religious ties) the family has and help them enlist help.