EXECUTIVE SUMMARY

The Affordable Care Act (ACA) helped fuel the growth of palliative care, creating opportunities for case management to improve.

  • The healthcare industry’s data collection has highlighted how expensive end-of-life medical treatment can be and will likely result in more integration of traditional care management with palliative care.
  • It’s never too early to bring up palliative care when patients have chronic and life-limiting conditions.
  • Palliative care providers have had training in pain and symptom management.

Palliative care’s recent growth has been partly fueled by the Affordable Care Act’s (ACA’s) focus on improving healthcare quality.

“It’s a very important topic,” says Walter Rosenberg, MSW, LCSW, manager of transitional care, health and aging at Rush University Medical Center in Chicago.

“I really hope the new payment models and structure under ACA will by necessity include palliative care more,” Rosenberg says. “So many people are struggling for a long time when they really should have been in hospice or palliative care.”

The ACA focuses on improved quality of care, and the health industry is collecting data that shows how expensive end-of-life care is when patients spend their last days in and out of hospitals. These efforts likely will result in more transitional care programs integrating hospice and palliative care, Rosenberg says.

“Palliative care is different because we try to look at people’s preferences and find value in determining what is the best care for them,” says Ellen Wild, RN, CHPN, palliative care nurse coordinator for the Mayo Clinic in Rochester, MN.

Integrating palliative care into case management is the next step in improving healthcare quality. “We have the ability to be in a role to have different conversations to elucidate people’s goals and wishes and preferences and to develop a care plan that meets their wishes,” Wild says.

Palliative care is a skill set that requires some attention, notes Diane E. Holland, PhD, RN, clinical nurse researcher in the Department of Nursing and an associate professor in nursing at the Mayo Clinic College of Medicine.

Case managers should consider palliative care for very ill patients, and it’s never too early to bring up advance care planning, especially if a person has a chronic and life-limiting condition, Holland says.

Holland and Wild offer the following suggestions for integrating palliative care into case management or educating patients and others about palliative services:

Care coordination. Palliative care nurses can provide care coordination with patients, similar to case management services.

“Oftentimes, I’m doing care coordination with patients via the phone,” Wild says.

“When palliative care patients are in the hospital there are multiple teams managing everything, but when they leave the hospital to go home, things kind of fall apart; people don’t know which medications to take, they let their symptoms go on longer,” she explains. “Palliative care outside of the hospital becomes more important.”

Wild calls patients and has visits in clinics, but she does not visit patients’ homes. That’s handled by a palliative care nurse practitioner, she says.

“We visit with new patients, providing education and care coordination, and then we triage all the phone calls and talk with patients as they call in with their concerns,” Wild says. “We coordinate with clinic providers.”

Eventually, the palliative care coordination services will expand to include inpatient and additional medical teams. “Then, we’ll do some follow-up discharge phone calling to make sure patients’ transition home is what it should be.”

For palliative care patients who typically are very sick, the transition home presents problems with symptom management and accessing resources, Wild explains.

“With palliative care, we have the ability to develop relationships with people over time, allowing nurses to have discussions of their goals of care,” she says.

Pain and symptom management. One of the most important reasons why case management might add a palliative care component is because nurses and others trained in palliative care know a great deal about pain and symptom management, Wild suggests.

Primary care providers generally have a brief window to discuss symptoms with patients, she says. “You will need someone with expertise in pain and symptom management who also is an expert in having difficult conversations with patients and helping them elucidate goals.”

Palliative care providers look at patients’ health from a whole person perspective and are better able to pull together all of the pieces, Wild says.

Discussing palliative care in case management. When case managers talk with patients who might benefit from palliative care or end-of-life care, it’s important to learn about the patient as a person and assess his or her own understanding of the illness, Wild says.

“You can find out what they are most hoping for and try to have those conversations in a way that reflects what they value and what’s important to them and their family,” she explains. “I try to approach each patient that way.”

Start by asking the patient and family permission to discuss advance care planning, and then find a certain comfort zone in bringing up difficult issues, Wild adds. (See case studies on advance care planning discussions in this issue.)

“I often tell patients and people when I speak about the difference between hospice and palliative care that hospice is always palliative care, but palliative care is not always hospice,” Wild says. “Hospice is end-of-life care, the last six months of life, and palliative care falls into the continuum of the spectrum.”

A chief difference is that palliative care patients can continue to receive treatment toward a potential cure at the same time they are receiving palliative services. Hospice patients do not receive treatment, and the chief focus is on symptom relief.

Education about palliative care and advance care planning. “Hospice is about the end of life, but palliative care is living your life to the fullest,” Holland says.

The World Health Organization calls palliative care an important public health issue that is concerned about patients’ suffering, dignity, care needs, and quality of life.

Case managers can learn more about palliative care and discussing values and end-of-life preferences with patients on sites such as the National Hospice and Palliative Care Organization’s (NHPCO) website at www.nhpco.org.

Also, physicians need to be aware that CMS has included two Current Procedural Terminology codes for advance care planning. The codes are for physicians to document, and receive reimbursement, for having advance care planning conversations, including a first 30-minute conversation with a patient and a second add-on code for another 30-minute conversation.

“In conversations about palliative care, we discuss the individual’s goals and values and help them think forward on what’s most important,” Holland says.

Patients will need to understand the risks of treatments, including side effects, she adds.

“I also think it helps to have conversations with the families,” she says.

A provider can ask the following questions:

  • Is the family in agreement with what the patient decides?
  • What happens when the patient can’t make decisions for him- or herself in a future episode of care?
  • Does the family know what the patient wants, and is it in accordance with their sensibility?
  • What would the patient’s parent(s) do in this situation?

Advance care planning includes deciding on a person to make medical decisions when the patient is unable to do so, but it’s important for family members to understand that they should base the decision on what the patient would want and would define as quality of life, Holland says.