Palliative interventions should be integrated into primary care for patients living with symptomatic multiple chronic conditions (MCC), a recent consensus paper indicated.

The consensus paper, published in Nursing Outlook, underscores research from 2023 reports by Blue Cross and Blue Shield, and the Congressional Research Service, that found adults with MCC are the largest, fastest growing U.S. patient population.

Adults with MCC represent one of the highest-need segments of the U.S. primary care patient population, according to the U.S. Centers for Disease Control (CDC). The paper stresses that evidence is growing that one chronic condition puts people at risk for developing others. An MCC can lead to physical and social problems, depression, cognitive debilities, as well as hospitalization. As the population ages, the number of patients with MCC will only continue to escalate, the paper said.

A new model for care

To mitigate this health care issue, the paper emphasizes the potential transformative effect that palliative care can have on the overall quality of life for MCC patients, especially when integrated into primary care settings. Researchers argue that a “proactive and patient-centered palliative care model can provide a holistic approach to managing symptoms and significantly improve overall well-being for patients.”

Kim Kuebler, study co-author and director and founder of Multiple Chronic Conditions Resource Center, said the primary care setting is the right place to integrate palliative care.

“Primary care providers are already taking care of patients with heart failure, chronic obstructive lung disease, dementia, obesity and diabetes. So, having more of a focus on symptom management and preparing patients to be more proactive in preventing their symptoms, keeps them symptom free and keeps them out of the hospital,” she told Palliative Care News. “It also allows them to be more physically active because when they go into hospital from an exacerbation, they become more debilitated.”

“Personhood suffering associated with chronic progressive diseases cannot be eliminated, but there is a lot of unnecessary suffering when palliative care is not available to the patient and their family,” paper co-author Dr. Eduardo Bruera, chair of palliative, rehabilitation & integrative medicine at The University of Texas MD Anderson Cancer Center, told Palliative Care News.

Bruera defines palliative care as person centered care to patients with chronic progressive diseases and their loved ones that is delivered by an interdisciplinary team in settings that include the home, outpatient facilities, and inpatient acute and long-term care facilities.

According to Bruera and Kuebler, an integrated palliative care model requires collaboration.

“When you talk about an integrated care model, I think about the collaborative care model with psych mental health providers. As a primary care provider, we still rely on our other colleagues to help support that patient. If someone has heart failure for example, you’re going to be working with a cardiologist. If somebody has COPD, you’re going to be working with a pulmonologist and possibly pulmonary rehab or cardiac rehab. Physical therapy is another example of integrated care.” Kuebler said. “So, there’s lots of different professionals that we work with to manage one patient.”

Bruera said an integrated model needs to be focused care “that accompanies the patient and family throughout the trajectory of a disease.”

Chronic conditions and cost

Along with providing better care for patients with MCC, integrating palliative care into primary care can greatly reduce costs.

According to the consensus paper, the economic burden for the management of MCC is substantial. One in three U.S. adults have MCC, including 80% of Medicare beneficiaries. The CDC estimates that adults with five or more MCC spend 14-times more on health care services than with adults who have no chronic conditions.

Currently, the costs of patients with MCCs account for 86% of U.S. health care expenditures. When considering mental health issues together with chronic conditions, the total costs exceed 90%, CDC indicated.

“The amount of health care resources to support two of the most expensive diseases – heart failure and COPD – is high because these patients are going in and out of hospital with exacerbations. They can’t breathe. They got too much fluid on board. They’re coughing. They’re developing bronchitis,” Kuebler said. “So, by preemptively taking care of symptoms, we prevent those patients from going into hospital, which would be a huge savings.”

Challenges and change

The paper authors advocate that palliative care be initiated at the time of diagnosis and used to reduce health care demands, costs and resources. But that integration is not without difficulty. In the “Need for Action” section of the paper, the authors acknowledge that nursing leadership and engagement are key to successful implementation in an integrated care model. To enhance knowledge of palliative care, Bruera said there also needs to be access to palliative care specialists to support primary care providers.

Another challenge to overcome is the stigma that hospice and palliative care carry as places where only terminal patients go.

“The Multiple Chronic Conditions Resource Center is all about using palliative intervention, not necessarily end of life. If you look at the paper, you’ll see that there’s no mention of end of life or hospice care,” Kuebler said. “It’s recognizing that non-reversible chronic conditions require palliative interventions. It doesn’t mean that they’re dying. So, the focus should be on symptom management and physical functioning. That will go a long way in terms of patient satisfaction.”

Fragmentation in health care is a significant barrier as well, because it can limit access to primary care for seniors. Fragmentation occurs when a patient’s care is spread across multiple providers, with no single practitioner seeing that patient for a large portion of their visits. This can lead to several issues, such as poor communication and coordination between providers, increased hospital visits, unnecessary testing and higher medical costs.

“There’s a lot of patients that don’t even have a primary care provider,” Kuebler said. “They may have high blood pressure or had a stent at some point in time, so they’re using their cardiologist as their doctor. Or patients change their insurance and their primary care provider doesn’t take that insurance anymore. So, they’re stuck between providers, trying to find who will accept their insurance. Those are real problems for older patients.”

“Seniors have huge challenges regarding self-care and family care as the disease progresses,” Bruera added. “The needs are not just medical, but socio-economic and they need a network of support to safely transition to the end of life.”

That support is especially important because there are no guidelines that include multiple diseases and multiple symptoms, Kuebler said. “I think when you’re practicing in primary care and you understand which symptoms correlate with different diseases, it’s easier to have those shared decision-making discussions with the patient, to empower patients through self-management and recognize early onset.”

The consensus paper presented three “Recommendations to Influence Policy on Integration of Palliative Care for MCCs in Primary Care”:

1. Align with the U.S. Department of Health and Human Services, the National Academies of Science Engineering and Medicine, the Agency for Healthcare Policy and Research, and the World Health Organization to initiate earlier palliative symptom management in patients living with MCCs.
2. Advocate for a new clinical nursing paradigm that moves palliative care upstream in the disease trajectory with a focus on clinical evidence-based symptom management in patients with MCCs.
3. Recognize that palliative care is far broader than implementation at the end-of-life and used in MCCs to reduce healthcare demands, costs, and resources in an escalating patient population.

“It’s really important that patients and providers recognize that palliative care is symptom management. It doesn’t require a specialist,” Kuebler said. “Multiple chronic conditions is the fastest, largest and costliest patient population. So, if we’re able to keep patients at home, keep them functional, prevent them from having exacerbations of their disease and going in and out of hospital, we’re not only going to keep them stronger and able to contribute, but we’re also going to reduce the cost of care for our country.”