By Debra Wood, RN, contributor
February 24, 2012 - Americans have a tradition of making up their minds and carrying out their desires, except when it comes to the care they receive at the end of life.
“There are issues with resolving patients’ desires for end-of-life care and what ends up happening at the time of the death, and there are many factors that contribute to that,” said Jennie Roberts, RN, CCM, MBA, chief nursing officer at Evercare Hospice & Palliative Care–UnitedHealth Group, in Denver.
A recent survey from the California Healthcare Foundation highlights how far apart people’s desires are from reality. Seventy percent of respondents said they would prefer to die at home, but in 2009, only 32 percent of deaths in California occurred at home. Nearly 80 percent of those surveyed said they definitely or probably would like to talk with a doctor about end-of-life care, but only 7 percent have actually had that conversation.
Kathy Brandt said most people do not want to think about their end of life.
The findings are not a fluke. Kathy Brandt, senior vice president, office of education and engagement at the National Hospice and Palliative Care Organization (NHPCO) in Alexandria, Va., said the numbers are consistent with other studies.
“Most people do not want to think about their end of life,” Brandt said. “Death is a hard reality for anyone to face. That’s an ongoing issue health-care practitioners are faced with--how do you have those conversations with people?”
The time to think it through is before a crisis.
A large majority of Californians, 82 percent, said in the foundation’s survey that it was important to have end-of-life wishes in writing, yet only 23 percent admitted having done so.
Brandt encourages nurses to start close to home by making sure they and their family and friends have completed advance directives.
Barbara Maffia, RN, said everyone should have a health care proxy, no matter what age.
“Everyone should have a health care proxy, no matter what age, because you need to have someone there to make decisions and honor your wishes,” said Barbara Maffia, RN, nurse manager of the ICU at SUNY Downstate Medical Center in Brooklyn, N.Y. “Life is strange, and you can go at the drop of a hat and not be able to make a decision.”
It is never too early for adults to discuss end-of-life care. Brandt said any life change, whether marriage, divorce or childbirth, provides an opportunity for advance care planning and updating of documents.
“People can choose to do everything, nothing or something in between, but at least it’s your choice when you are writing down your wishes, and that’s important,” Brandt said. “Otherwise, someone will make the decision for you, whether a doctor or a family member.”
Nurses changing outcomes
“There are millions of nurses in the United States, and if everyone took a moment to say, ‘Is there any way I can help you with your advance directives,’ we would revolutionize the ability of patients to think about how they will think this through with loved ones,” said Terry Fulmer, Ph.D., RN, FAAN, dean of Bouve College of Health Sciences at Northeastern University in Boston. “Mobilizing the nursing workforce could set the nation on a path to embrace all of the opportunities palliative care can provide.”
Terry Fulmer, Ph.D., RN, FAAN, called on nurses to bring up the subject of advance directives at patient encounters, not just when the person has a life-limiting disease.
Fulmer acknowledged that some nurses may not think discussing advance directives is within their scope of practice, but she maintains that initiating that conversation and helping people create the documentation is within a nurse’s scope of practice and should be as routine as asking about immunizations.
“It is for us to take hold of this and lead,” said Fulmer, explaining that nurses often think someone else will do it, but that’s not likely. And often, the nurse is the best person to ask the question, because the nurse will have the closest relationship with the patient.
NHPCO’s Caring Connections website offers materials with suggestions about how to initiate the conversation among family members and forms to document one’s end-of-life desires. The materials are available at no charge for personal use.
Advocating for patients
Frequently, the physician and other members of the care team are so focused on curative care that discussions about end-of-life care are postponed. A recent multisite, U.S. study reported in the Annals of Internal Medicine found that even among Stage 4 lung and colorectal cancer patients, talking about end-of-life options did not take place until late in the course of treatment, a median of 33 days before death, and often occurred with a provider other than the treating oncologist.
“The timing of the discussions and the skill sets around those discussions are not in a lot of clinicians’ repertoires,” Roberts said. “This is not a discussion you have one time. There needs to be repeated discussions, not only with the patient but with the family.”
That conversation should include the consequences associated with each option, and even after the patient voices his or her desires, it’s important to check that the person still feels the same way as time goes on and the disease progresses, Roberts said.
Mary T. Boylston, RN, MSN, Ed.D, AHN-BC, professor of nursing at Eastern University in St. Davids, Penn., added that death is often a taboo subject with physicians, “because it can mean that they have ‘failed’ to save the patient. Yet, ego aside, abiding by a person’s final wishes is a tremendous gift.”
Sometimes, patients will open up to nurses, and the nurse must be ready to actively listen to the patient’s desires and preferences, said former hospice nurse Lisa Erbstoesser, RN, president of See Me Communications in San Luis Obispo, Calif.
“Nurses spend more time [with patients] and are often able to have more candid conversations with folks,” Brandt added. “Patients often express fears and uncertainties to nurses that they might not feel comfortable doing with doctors.”
To properly handle the discussion, Erbstoesser said, nurses also must become knowledgeable about hospice care and palliative care. She called hospice care more patient-centered than most medical models and advised nurses to suggest it to the treating physician when it’s appropriate.
Susan Shayne, BSN, RN-BC, said once a patient enrolls in hospice care, those nurses will discuss end-of-life wishes.
Once the patient gets to hospice, those nurses will regularly talk about end-of-life options and how to accomplish that, said Susan Shayne, BSN, RN-BC, with BAYADA Hospice in Vermont. The admission packet includes a Critical Orders for Life-Sustaining Treatment form, a do-not-resuscitate form kept in the home and advance directive forms. The hospice can fax that information to a physician if a patient goes into the hospital.
What goes wrong?
Even when people document their wishes, things can go wrong. Patients may want to die at home, yet they or a loved one will call 911 and seek hospital care when the patient’s condition starts to deteriorate.
“People panic, and emotions sometimes get in the way,” Shayne said.
Boylston called dying at home a gift, adding that “besides the emotional turmoil of letting go, physical care of a person who is suffering can take a toll on family. Therefore, it is important that families and health care providers meet with one another to determine the plan for the final hours.”
If a patient sees that their care is overwhelming to the family, they will often offer to be moved to another level of care, said Rose M. Rosenberg, RN, MA, vice president of hospice care in Westchester & Putnam in Tarrytown, N.Y.
“There are times that the caregivers just wear out and are unable to handle the day-to-day care that is needed for a patient,” Rosenberg added. “They call 911 or ask to have the patient transferred to the hospital or a nursing home for inpatient care or a five-day respite stay.”
Once in the hospital, they may end up on a ventilator or receiving other treatments in an intensive care unit that precludes a death at home.
Without a health care proxy, some family members will want everything done and others are in disagreement. Maffia said that when that happens, the case is referred to the ethics committee, which discusses options. Nurses will try to educate and support family members.
“If you don’t discuss treatment options and don’t document them, things may not go the way you want them to,” Shayne said. “In the medical community, we tend to treat, treat, treat.”
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