Help patients and families as they struggle with end-of-life issues
Hospice care allows patients to be cared for at home
When patients appear to be reaching the end of life, case managers should find out their wishes, alert the treating physician and the rest of the staff, and ensure that patients’ wishes are carried out.
- In an effort to encourage discussions about end-of-life care, the Centers for Medicare & Medicaid Services (CMS) has begun paying physicians for consultations on advance care planning.
- CMS’ push toward pay for performance and bundled payments creates financial incentives for hospitals to consider alternatives to admitting patients as inpatients.
- Providers’ feelings sometimes make them hesitant to talk about end-of-life issues with patients and family members.
- Case managers should take a patient-centered approach and find out patients’ goals before bringing up hospice care, and educate family members on what to expect when they get home.
More than 80% of patients say if they have a terminal illness, they don’t want to spend their last days in the hospital, according to the Dartmouth Atlas of Healthcare.1
But a large percentage of patients expire in the ICU, hooked up to multiple monitors, and often on a ventilator, says Toni Cesta, RN, PhD, FAAN, partner and consultant in North Bellmore, NY-based Case Management Concepts.
“This is difficult for family members and for patients, many of whom prefer being at home,” she adds.
When patients die in the hospital, they often are denied an opportunity for closure, a chance to see friends and family members, to spend their remaining days in closeness with their spouse, and to enunciate their final wishes, says Ellen J. Windham, LVN, AAS, BAAS, a hospice nurse for more than 15 years and author of Hospice: The Last Responder, a guide to hospice for patients and family members.
“The average stay in hospice is seven days, a figure that hasn’t changed in years. Hospice services have been available since 1974, but people still don’t understand the concept,” she adds.
The Centers for Medicare & Medicaid Services (CMS) has agreed to pay for physicians to have consultations with patients on how they would like to be cared for as they are dying. The rule, which took effect Jan. 1, pays for an initial 30 minutes of advance care planning in the doctor’s office or in the hospital and for each additional 30 minutes of consultation.
“This could result in a lot more patients having an end-of-life consultation and it’s obviously what CMS wants to happen. Since the rule just went into effect a few months ago, it’s too early to know whether it’s happening,” says Linda Sallee, RN, MS, CMAC, ACM, IQCI, director for Huron Healthcare, with headquarters in Chicago.
As advocates for patients, case managers should educate patients about end-of-life options and help initiate a conversation with their loved ones, adds Patrice Sminkey, RN, chief executive officer for the Commission for Case Manager Certification.
Start by including questions about advance directives in the comprehensive assessment, she says.
“Case managers are highly trained communicators and facilitators and they should use those skills to benefit patients. Regardless of how challenging it is, case managers should never walk away from patients with difficult decisions to make,” she says.
Although some patients are eager to have the conversation about end of life and hospice if invited, others are afraid to go there, adds Joseph D. Rotella, MD, MBA, HMDC, FAAHPM, incoming chief medical officer of the American Academy of Hospice and Palliative Medicine, and a palliative care and hospice physician for 15 years. “Some patients don’t want to think about the possibility they might die and as long as nobody is having the conversation, they don’t have to think about it. These conversations can be challenging for both patients and healthcare providers,” he adds.
Case managers should be having a conversation about hospice with patients who might benefit from hospice care and their family members during the entire hospitalization, Sallee says.
“I think that many people are ready to talk about end of life before the family members are, but they hesitate so they don’t upset the family. In that case, they may not get closure and may die without tying up the loose ends,” she says. (For more about how to talk to patients and physicians, see related article in this issue.)
Educating patients and family members about hospice and palliative care and gaining their acceptance takes a great deal of time, and case managers don’t have the time if they have large caseloads, Cesta points out.
“This is a good example of where a social worker and a nurse case manager can work collaboratively. The nurse handles the clinical needs and the social worker concentrates on the psychosocial needs,” she says. “Social workers may be able to sit down with the patient and family and spend the time that’s needed. It takes more than just one conversation.”
Before the hospital staff can arrange for hospice services, patients and their families have to be willing to consider hospice care. Then they have to be eligible and willing to make tradeoffs in order to qualify for the services, Rotella points out.
There are numerous other roadblocks that may impede eligible patients from receiving hospice care, Sallee says. Physicians may be reluctant to tell patients they can’t help them any more because they fear they will lose their patient to a hospice physician, or because they have a sense of failure or a sense of sadness, she adds.
Physicians are sometimes blamed for delaying hospice when they simply are trying to ensure that patients can receive the services as long as they are needed, Windham adds. “Two physicians have to certify that they believe a patient is unlikely to live longer than six months for Medicare to pay benefits at 100%, so physicians wait to order the services to make sure the patient qualifies and can benefit from the services without the risk of interruption in care,” she says.
Patients with Medicare who choose hospice care give up some of their other benefits, Rotella says. For instance, hospice benefits do not cover room and board at a skilled nursing facility.
“While we encourage people to consider hospice, the rules and regulations sometimes put us in a bind,” he says.
Healthcare professionals have more than just a moral imperative to educate patients and their family members on hospice care and to consider referring appropriate patients for hospice services, Cesta says.
With CMS’ increased emphasis on pay-for-performance and quality of care, there is also a financial imperative to include hospice care in the list of discharge options, she adds.
“CMS is trying to stop hospitals from admitting patients at the end of life and encouraging them to provide patients with an alternative to hospitalization, such as hospice services or palliative care,” she says.
For instance, patient mortality is a part of the outcome domain under value-based purchasing, Cesta points out. The measure includes patients hospitalized for acute myocardial infarction, heart failure, or pneumonia who expire within 30 days of admission to the hospital in any location. If patients have been enrolled in Medicare or Veterans Administration hospice programs within 12 months of the admission or are designated for hospice care on the first day of hospitalization, their deaths are not included. In 2016, the outcome domain represents 40% of a hospital’s value-based purchasing score.
In addition, CMS’ Hospital Compare website includes 30-day mortality rates for patients hospitalized for chronic obstructive pulmonary disease, heart failure, acute myocardial infarction, pneumonia, stroke, and coronary artery bypass graft.
As CMS moves toward bundled payments, providers may be prompted to look a different way at providing care to terminal patients, Sallee says.
“In the future, more and more hospitals and external providers will be collaborating and sharing financial risk for the care. As providers become more responsible for the entire cost of care, hospice is going to come into play more frequently as a cost-effective level of care. Providers are going to start to think about if they are doing patients a favor if they perform an invasive treatment that isn’t going to improve the patient’s health,” she says.
As they develop discharge plans, unit-based case managers also have to think beyond the hospital walls, particularly if a patient is approaching the end of life, Cesta says. “Talk to the family and develop plans to avoid unnecessary admissions or visits to the emergency department,” she says.
Cesta suggests that case management directors work with the ED team to develop a plan to avoid hospitalizing patients who could benefit from hospice services provided at home, rather than admitting them to the hospital.
“This is another discharge planning, utilization management, and ethical issue that should be dealt with at the front door. It’s placing the patient in the right level of care from the beginning,” she says. “This is another strong argument for having case management staff the emergency department 24 hours a day, seven days a week,” she says.
“As patient advocates, it’s part of the case management role to help patients decide what kind of care they want at the end of life, to remind the rest of the team of the patient’s wishes, and reassure them that they are carrying out the patient’s wishes,” Sminkey says.
But even when patients make their wishes clear, the healthcare team may be hesitant to carry them out, says Catherine M. Mullahy, RN, BSN, CCRN, CCM, president and founder of Mullahy and Associates, a Huntington, NY, case management consulting firm.
When Mullahy’s father was dying, he already had signed advance directives with very specific details, but Mullahy says she had an uphill battle to get the hospital staff to carry them out. She encountered the same roadblocks when her mother died.
“The healthcare system pushed back. The culture in the hospital is just to keep going and try one more thing. All too often, I had to intervene to ensure that their suffering was not made more protracted by treatment for this symptom or that abnormal lab value,” she says.
As the family left the hospital after her mother’s death, Mullahy’s sister asked: “How do other families do this without a case manager?”
“As case managers, we can do so much to help patients and their families as they struggle with end-of-life issues. We need to educate ourselves and then educate our colleagues and support patients and families through this difficult time,” Mullahy says.
The Commission for Case Manager Certification (CCMC) has published an issue brief with information case managers can use to assist their patients who are facing end-of-life issues. To read the brief, visit www.ccmcertification.org and click on “issue briefs.” CCMC has added The Conversation Project’s tools that can be used to support end-of-life conversations. The Conversation Starter Kit can be found at https://ccmcertification.org/webinar-library. There also is a learning module and free toolkit available at www.cmbodyofknowledge.com/content/conversation-project-toolkit.
- The Dartmouth Atlas of Health Care. Inpatient Days Per Decedent During the Last Six Months of Life, By Gender and Level of Care Intensity. http://bit.ly/1Uldp3S.
More than 80% of patients say if they have a terminal illness, they don’t want to spend their last days in the hospital, according to the Dartmouth Atlas of Healthcare.
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