Eli's Hospice Insider

Palliative care can follow your patients throughout the health care system.

Despite the fact that many would prefer to die at home, 60 to 70 percent of Americans end their lives in hospitals or nursing homes. Broadening the scope of palliative could change that.

Palliative care asks, "How do I help you live well if I can't take away your illness?" said Shelly Garone, MD, FACP, with Kaiser Permanente in Sacramento during the National Association for Homecare and Hospice's annual meeting.

The Kaiser Permanente medical care program includes health plans, hospitals, and medical groups, making them a good place to develop palliative care practices that move with the patient through different care settings.

With inpatient palliative care teams in each member hospital, Kaiser has seen demands from patients and staff that palliative care options be outlined to them earlier on in the disease process, Garone said.

As a result, social workers are now visiting patients in Kaiser's outpatient oncology clinics with a life expectancy of two years to help outline a palliative care plan. Next on the radar for early palliative care intervention are heart failure patients, those with a chronic obstructive pulmonary disease (COPD) diagnosis, and patients beginning dialysis treatment.

To help keep different healthcare settings aware of the patient's palliative care needs, good charting is essential and should include status of advanced directive, whether the patient has a Physician's Order for Life Sustaining Treatment (POLST) form, and whether he has a code status preference, Garone said.

Vulnerable population: Kaiser Permanente is also working to get palliative care practices lined up with the needs of nursing home patients. Custodial patients are likely to live and die in the ursing home, and without proactive measures will often wind up back in the emergency room or hospital, Garone said. Having conversations to find out their care preferences can make for a better experience for both patients and their families.

Garone sees the first step in palliative care as seeing the whole person, not just the patient. Kaiser's palliative care teams ask patients, "Who are you? What's important to you; what drives you; what do you hope for; who gives you support; do you have a faith structure; what do you want to know or not know; do you need help getting groceries; can you drive without passing out?" They look for ways to line up healthcare with what the patient wants.

According to Garone, a patient has palliative care needs when:

• He understands he will never live free of his condition;

• He has a new chronic diagnosis;

• He has a new frailty;

• His caregiver asks, "When will he be like he used to be?"

• You answer "no" to the question: "Would I be surprised if he died in the coming year or two?"

Patients receiving palliative care have the following needs, Garone said:

• Understanding the disease they are living with and what it's likely to do over time.

• Telling their healthcare team how they want to live in the face of their illness.

• Trusting their healthcare team to honor their goals and values and to create care plans that make sense to them.

• Trusting their healthcare teamto help them feel as well as they can despite the disease.

Kaiser Permanente's palliative care teams help their patients to do advance care planning. They work with patients to forecast what they will need in three months, and how those needs will change over the course of a year, Garone said. The palliative care team makes sure that the medical plan aligns with the patient's goals, and that whoever will be making decisions knows what all the treatment options are -- including not treating.

The palliative care team also works to make certain the patient lives as well as possible -- that his symptoms are managed and his care is coordinated. They also make certain that all health care staff who will work with the patient in some capacity know what he has shared with the palliative care team.

This may come in handy: A new brochure from the National Institute of Nursing Research (NINR), a component of the National Institutes of Health, makes it easy to understand what palliative care is, who it benefits, and how it works.

The brochure, "Palliative Care: The Relief You Need When You're Experiencing the Symptoms of Serious Illness," describes how palliative care can help those suffering from pain and other unpleasant symptoms of illness and medical treatments.

The brochure also dispels the notion that palliative care is only for the dying. Although often seen as an end-of-life protocol, "palliative care provides relief to patients dealing with chronic illnesses as well, including AIDS, cystic fibrosis, and diseases of the heart, lungs, and kidneys," noted Dr. Patricia A. Grady, NINR director in a press release.

Added benefit: Palliative care may focus on relieving pain and discomfort, but research has found other positive outcomes, including improvements in patient-provider communication, emotional support, and satisfaction with overall care.

"As the lead NIH institute for end-of-life science, NINR supports research that helps develop the evidence base for palliative care, which not only relieves pain and suffering, but also provides critical emotional support to family members who are faced with difficult end-of-life decisions while grappling with the impending loss of a loved one," said Dr. Grady.

For more information about the brochure and other NINR materials, visit www.ninr.nih.gov or call 301-496-0207.