Here’s how to help these patients obtain more benefit from hospice services
Patients who are dying during the course of intensive care or end-stage renal disease could greatly benefit from referrals to hospices, even if such referrals are made within days of the patient’s death, experts say.
"Three days is the longest time we’ve had with an intensive care unit [ICU] patient," says Ruth Fillebrown, RN, CRNH, clinical director of Lehigh Valley Hospice of Lehigh Valley Health Services in Allentown, PA. "We may only have an ICU patient for 24 hours, but it’s enough to establish a relationship," Fillebrown says. "It lets us get a handle on how well the family is doing, so we know how to follow up with them."
Previously, dying ICU patients often were sent to the hospice’s eight-bed inpatient unit at the very last moment, Fillebrown says. "We’d see that patients would die in the ambulance on the way to the hospice unit, or they’d get to the hospice unit and only live a few hours," Fillebrown recalls. "We were hearing from families that the hospital couldn’t do anything more for the patient, so they’d ship the person to the death ward."
Hospice staff found this frustrating because they were limited in their ability to provide symptom control and palliative care expertise, Fillebrown says. Then a private foundation grant enabled the hospital to create a palliative care program that later was expanded to the current more integrated approach, in which hospice nurses or social workers will become involved with hospitalized patients and their families while they are in the ICU, Fillebrown says.
As in all hospitals, many ICU patients die while hospitalized, says Daniel Ray, MD, associate director of the medical ICU at Lehigh Valley Hospital. "So you’re focused on curing, but when patients don’t survive, you’re at a loss for what to do," Ray says. Because of this experience, Ray says, he has become more compassionate about patients’ end-of-life experiences. Now he believes it’s important to pull hospice in early during a patient’s ICU stay, since it’s difficult to know which patients will survive.
Lehigh Valley Hospice staff are collecting data about ICU patients to see if it would be possible to expedite referrals so more hospice time and services could be offered to these patients, Fillebrown says. "One thing we’ve seen is that certain diagnoses in the ICU, such as stroke patients, may end up in long-term care placement," Fillebrown explains. These patients often are diagnosed with having less than six months to live and are thus eligible for hospice. It would benefit these patients and their families if hospice staff were called in before they are discharged from the hospital, she adds. "The families are devastated and on this emotional whirlwind," Fillebrown says. "We’d like to talk with them and let them know someone is there to support them, and we could be part of the conversation before they are transferred out of the ICU."
Another type of medical patient who typically lacks access to hospice is the end-stage renal disease patient, says Lewis M. Cohen, MD, medical director of the Renal Palliative Care Initiative at Baystate Medical Center in Springfield, MA. "Hospices ought to be looking to areas which previously have not been offered its services," Cohen says. "There are 300,000 dialysis patients receiving treatment in the United States, and over 20% of them die each year."
Nephrology and hospice open discussions
The possibility of providing hospice access to dialysis patients is only beginning to interest hospices and the nephrology community, which now has some discussion on the topic at national conferences, Cohen says. "The nephrology community has begun to recognize the need to attend to these matters," he says.
For example, the first book in nephrology to address this issue, Supportive Care for the Renal Patient, was published by Oxford University Press in November 2004. "It has some excellent chapters in there that would open the eyes of hospice staff as well as nephrology staff," Cohen says.
Cohen, Ray, and Fillebrown offer these suggestions for how to improve hospice access in ICUs and dialysis treatment departments or centers:
• Educate hospital administrators and ICU staff about hospice.
Lehigh Valley Hospice staff now are invited into the ICU to meet with patients and families to discuss whether treatment will continue and when it’s time to move into hospice care, Fillebrown says. "Our nurse or social worker will go in and meet with the family, along with the ICU team," she says. "The ICU philosophy is to constantly be aggressive in treatment, so it’s bringing in a different approach when there are patients where aggressive therapy won’t help," Fillebrown says. "When you reach the point where treatment is futile, it’s important to let patients know we have other options for them."
The program Ray helped to create for Lehigh Valley Hospital expands the hospice philosophy to ICU patients and families, as well as to ICU nurses and physicians. "It needs to be a team approach, empowering nurses in decision making because they’re with the patients and families and recognize the social issues and spiritual issues," Ray says. "They can allow families to bring those issues to the forefront, so they’re not always talking about drips and sedations and ventilators but also are talking about the big picture and psychosocial issues that follow."
ICU nurses take a one-day inservice that covers palliative care and end-of-life issues, Ray says.
• Have a dedicated liaison between hospital and hospice.
From an educational standpoint, it helps to have someone who is familiar with both hospice and the ICU to serve as a liaison who will promote the hospice philosophy in the hospital, Ray says. "If we anticipate a patient not surviving, and we move toward comfort measures only, we want to make sure hospice philosophies are applied right away, and a liaison allows us to do that," Ray adds. "They help to apply protocols and educate the family on what hospice is all about, so within 24 hours we are able to transfer the patient to the inpatient hospice unit."
If medical staff believe the patient will not survive the transfer, then the liaison is there to help the ICU team and the patient’s family apply hospice philosophies within the ICU setting, Ray says.
• Initiate discussions with physicians and clinics.
The first step to improving hospice access to end-stage renal disease patients is for a hospice administrator to contact local nephrologists and dialysis centers to introduce the possibility of working with them, Cohen says. "This can start with a telephone call to dialysis clinics, expressing some willingness to come over and talk with staff," he says.
Some patients decide to stop dialysis
Even if some doctors and patients have a desire to continue dialysis as long as possible, there are many patients who have made the decision to stop dialysis treatment, and these patients are especially good candidates for hospice care, Cohen says. "So there are always a substantial number of these folks for whom there’d be no question that they’d be covered," he says. "And if a hospice was available to them, they might be able to get out of the hospital and die a more satisfying death at home."
The palliative care demonstration project at Baystate Medical Center, funded through a private grant, has resulted in an educational program that is offered to members of dialysis medical teams, Cohen says. "We encouraged them to come up with different interventions that might improve palliative care of their patients," Cohen says. "Among the things they came up with were some treatment protocols for common symptoms of this population, so we posted copies of these protocols at all of the dialysis clinic nursing stations."
Another intervention that has been well-received is an annual memorial service for staff and families, Cohen says.
• Provide hospice-specific training for hospital residents.
"The biggest thing we’ve accomplished is allowing physicians, particularly the residents, to realize that not every disease is curable, and we’re not always very good at predicting those who will survive and those who will not survive," Ray says.
Care should include spiritual, family concerns
The program trains physicians to have an open-ended discussion with families and to share collaborative goals of care with families and patients, he says. "It’s still directed by the attending physician, but we try to give residents as much autonomy as possible," Ray notes. "They’re very concerned about telling what the blood pressure is and the subsequent blood gases, while we focus on whether the patient is in any pain."
The goal is to encourage physicians to look at a patient’s spiritual and family concerns, creating a goal of care that incorporates all of these issues, rather than just looking at the medical issues, Ray says.
Fillebrown teaches a hospice session to residents as part of their required education, and there’s a mandatory palliative care rotation incorporated into the education for medical residents, she says. "In our system, hospice is a core service just like pediatric care, cardiac care, and everything else," Fillebrown says. "It’s not for everyone, but when it’s appropriate, we want them to understand how good our program is here."
Residents learn how to communicate bad news and run a family meeting, Ray says. "In a monthly conference we talk about those who died and raise questions about whether they’ve had any problems with family communication," Ray adds. "We’ve dovetailed this into a larger residency program in which we have a monthly lecture for all residents, including surgery, internal medicine, and ob/gyn, related to communication and symptom management and goals of care discussions."