Filling the gap: Uniting primary and palliative care
Palliative care alongside cure-focused treatment or disease management is beneficial to both patients and their caregivers throughout the progression of a severe condition, regardless of its prognosis. Explaining what it is and what benefits it brings can overcome patient reluctance.
Primary care is…well…primary in delivering coordinated, patient-centered care. But the combination of primary and specialty clinicians along with those in palliative care can deliver another layer of support at a critical time in a patient’s life.
Providers are dedicated to improving the lives of their patients in the best manner possible, using parts of their “toolkit” that may combine surgical and other treatment options, medications and their management, therapy and more. But too often in discussions of improving coordinated care, there’s not enough inclusion of the role of palliative care (PC) and ways to combine it to close care gaps alongside cure-focused care or disease management.
Conserving the most desirable quality of life
As you know (but most patients probably do not), palliative care varies from hospice in that it can be offered to improve quality of life for patients and their loved ones at any time in the cycle of one or more serious conditions. Palliative care affirms life, regarding dying as part of the normal process of a lifetime. PC neither hastens nor postpones death; rather, it sets out to conserve the most desirable quality of life until death.
Patients’ lack of understanding of the difference between palliative care and end-of-life hospice care can cause them to fear it when you first raise the subject of PC services. Thus, some of the following background on palliative care, and how it provides an extra level of support, can alleviate some of that initial reluctance.
Aligning with patient preferences, values and goals
PC addresses and treats symptoms while working with the patient’s support system — family members and patient-designated friends and caregivers — to help ensure that care aligns with each patient’s preferences, values and goals. Near the end of life, palliative care may become the sole focus of care. But PC care alongside cure-focused treatment or disease management is beneficial throughout the progression of a severe condition, regardless of its prognosis.
The Center to Advance Palliative Care’s definition describes PC as specialized medical care focused on providing patients with relief from the symptoms, pain and stress of a serious illness — whatever the diagnosis. The goal is to improve the quality of life for both the patient and the family, working with a patient’s other caregivers to provide an extra layer of support. It is appropriate at any age and any stage in a serious illness, and can be provided together with curative treatment.
Unfortunately, the majority of research related to care at the end of life continues to demonstrate that it is often substandard.
Although many patients wish to die outside an institutional setting, the majority of Americans continue to die in healthcare facilities, with their pain and symptoms poorly managed.
Gaps, benefits re: palliative care
Specialty palliative care early in treatment has been shown to improve symptoms and quality of life for patients with serious conditions. Nevertheless, while early outpatient PC is the aim of various programs, specialty PC services are frequently just open to patients who are hospitalized or in hospice. The need for palliative care specialists surpasses the supply, especially in the outpatient environment as outpatient specialty PC clinics are limited. As the number of patients with severe conditions increases — as well as the number of their concurrent disease states — this gap may grow even further.
There is overwhelming evidence that for patients with severe illness, getting palliative care is more beneficial in every regard than no access, and immediate access is more useful than late. Many studies of PC pro
grams show they can enhance patient results, including symptom control and quality of life, and caregiver outcomes, such as decreased anxiety and depression. Further, most studies show at least cost neutrality, with many showing substantial cost avoidance by transfer of care from acute-care settings to patients’ preferred locations — at home or in residential hospice.
“Palliative care is intended to prevent and relieve suffering; however, studies also show that patients who receive concurrent palliative care tend to live at least as long as those whose care is directed at disease management alone.” (see study reports 1, 2).
CPC+, PCMH and the value of primary care-driven palliative care
Most Americans die from complications of chronic diseases such as diabetes and cardiovascular disease that are routinely treated in the primary care office.
Integrating a primary care provider in the initial palliative care process may address gaps in care planning and symptom management for patients with severe diseases.
This chart is an example of how to facilitate primary palliative care coordination.
Care coordination has been shown to reduce fragmentation and improve quality via primary care-driven, quality-based delivery models such as comprehensive primary care plus (CPC+) and patient-centered medical home (PCMH).
These programs emphasize team-based care, communication and coordination, which has been shown to lead to better care. With the quickly changing payment environment, practices must learn to position themselves in a fashion that confirms their value, enabling them to flourish in a value-based system.
The primary-care-driven model, particularly in CPC+ and PCMH-structured organizations, encourages each provider to operate at the uppermost of his or her license to improve operational efficiency and, by design, hopefully optimize patient clinical, financial and satisfaction outcomes.
A rapidly increasing number of health insurers and primary care clinics are now focusing on care coordination, especially for patients with complex care management needs. Uniting primary and palliative care not only appeals to payers but also potentially sets the stage for a practice to demonstrate its value of care.
The fear of pain vs. opioid epidemic issues
Not really surprisingly, living with the pain leading up to death is what many people say they truly fear the most of the dying experience. Unfortunately, pain at the end of life is consistently undertreated. Seventy to 90% of patients dying of cancer, heart failure, COPD, AIDS-related afflictions, and/or other conditions are likely to experience pain, so it’s a significant aspect of care.
In the U.S., The Joint Commission includes pain-management standards in its reviews of healthcare organizations; in fact, in 2018 it began mandating that each hospital has an appointed manager in pain management.
The opioid overdose epidemic in the U.S. prompted the Centers for Disease Control and Prevention (CDC) in 2016 to issue guidance for opioid prescribing. That guidance has considerably bypassed or excluded restrictions on treatment of patients with cancer, other terminal conditions, or pain from sickle cell disease.
Nonetheless, some insurance payers inappropriately used this guidance to deny opioid coverage for those specific populations. There continues to be almost no guidance for risk assessment and management for prescribers of opioids to treat pain in patients with cancer or other terminal illnesses.
The U.S. Food and Drug Administration (FDA) offers a risk evaluation and management strategy for long-acting and extended-release opioids to inform providers about appropriate prescribing and to promote the safe use of opioids for patients who require them. Further, a number of states have specialized training, licensing and documentation requirements for opioid prescribing.
Providers fear legal consequences from prescribing the high doses of opioids which are legitimately required to manage pain at the end of life. Despite this, political and professional medical groups, regulators (including the CDC and FDA), and even the U.S. Supreme Court have stated that proper treatment of pain is both a right of the terminally-ill patient and a significant obligation of the provider.
In fact, providers have been successfully sued for under-treatment of pain. Providers may feel trapped between the consequences of overprescribing or under-prescribing opioids; however, there continues to be a wide range of situations where providers can safely and adequately manage pain for terminally ill patients.
How clinical pharmacists add value
In these complicated waters, this is one of the many areas where clinical pharmacists can play a pivotal role and add value on the care team. Using their extensive skill set in medication management, they can provide guidance to payers and providers alike regarding the proper and authorized prescribing of opioids, especially in a palliative care or hospice situation.
Pharmacists also provide much-needed medication counseling to patients, their families and other members of the care support team. They also recognize the critical nature of closely monitoring therapeutic responses in these complex medical cases. Most patients in palliative care take multiple medications for multiple concurrent conditions, so it’s imperative to keep their medications closely and comprehensively monitored.
As part of the clinical team, the clinical pharmacist also can leverage his or her knowledge regarding the patient’s medication insurance coverage, including formulary restrictions and prior authorizations required to begin or continue a particular drug regimen. Thus, in addition to making an important contribution to patient costs and medication safety, clinical pharmacists can alleviate unnecessary stress by patients and their caregivers by offering alternatives to some medications for which we’re seeing growing shortages.
More work remains
Obviously, the situation shows that obstacles remain to optimizing the inherent benefits of palliative care. Providers are busy and our care system remains disjointed to various degrees, plus patients and the general public still too often lack knowledge regarding the options, benefits and coverage for pain management and PC. These factors and more typically result in unalleviated pain for the severely or terminally ill.
A more comprehensive understanding of palliative care will enable the tailoring of educational initiatives to address needed improvements. Near the end of life, PC may shift to the sole focus of care. But even before then, palliative care delivered in conjunction with cure-focused treatment or disease management is beneficial throughout the progression of a severe illness, regardless of its prognosis.
Education and training resources
Empowering providers and the entire care team through education regarding palliative care is crucial to developing and executing high-quality services that maximize value and optimize outcomes. Here are a couple educational resources:
National Palliative Care Research Center (NPCRC) provides access to a range of palliative care measurement and evaluation tools. Target audience: MDs, NPs, PAs, RNs, SWs
Education in Palliative and End of Life Care (EPEC) teaches fundamental palliative care skills in communication, ethical decision-making, psychosocial considerations, and symptom management. The curriculum combines didactic sessions, video presentations, interactive discussions, and practice exercises. Target audience: MDs, NPs, PAs, RNs, SW