Think Tank

Should Palliative Care Be Reformed?

Legislators in Sacramento and Washington, D.C., are considering bills changing the way health care systems deal with palliative care.

In Sacramento, several bills deal directly and indirectly with palliative care:

  • SB 1004, by Sen. Ed Hernandez (D-Sacramento) and Sen. Lois Wolk (D-Davis), calls for Medi-Cal to launch a pilot project to determine whether the state’s Medicaid system should be offering palliative care benefits to beneficiaries.
  • AB 2139, by Assembly member Susan Eggman (D-Stockton),  would require health care providers when making a diagnosis of terminal illness to notify patients or patients’ guardian/agent of the right to comprehensive information and counseling regarding end-of-life care options.
  • Two other bills authored by Eggman — AB 1571 and AB 1572 — would create a public rating system and oversight for California residential care facilities for the elderly.

In Washington, D.C., two bills are making their way through Congress that would expand palliative care and the medical subspecialty focused on relieving pain:

  • The Palliative Care and Hospice Education and Training Act — S 641, by Sen. Ron Wyden (D-Ore.), and HR 1339, by Eliot Engel (D-N.Y.) — is aimed at preparing the health care workforce for the growing need for palliative and hospice care.
  • HR 1666, by Rep. Emanuel Cleaver (D-Mo.), seeks to expand research, establish a workforce training initiative and convene health care stakeholders to develop a plan to manage pain and treatment associated with chronic disease.

California last month received a “B+” in a policy report card from  the American Cancer Society Cancer Action Network rating states’ policies and practices in palliative care.

We asked stakeholders, experts and legislators what policy moves were needed to improve palliative care.

We received responses from:

Growing Need for New Layer of Medical Support

For a growing population that now endures serious illnesses for longer periods of time, a new layer of medical support has emerged. Where once home health and hospice were the sole alternatives, palliative care has arrived to fill the health care gap. 

Palliative care is designed to provide support for patients with chronic, life-limiting conditions but who aren’t yet terminal. People with chronic illnesses such as congestive heart failure, chronic obstructive pulmonary disease, dementia, cancer, kidney disease and advanced neurological diseases such as Parkinson’s and ALS typically need a team of professionals to address all facets of the disease process by supporting a patient physically, emotionally and psychologically. 

If it sounds too good to be true, it isn’t. The primary complication up to this point has been the absence of palliative care education and exposure. It remains a relative unknown to the lay person, despite the unanimous hospital reports of patient satisfaction once a palliative service has been used. But more troubling is that many health care providers understand it in theory but aren’t clear when to put it into practice. Physicians, nurses and other clinical professionals often have the misunderstanding that palliative care is hospice, and therefore should only be implemented toward the end of a patient’s life. In actuality, palliative care can and should be provided in conjunction with curative measures while combatting a chronic or serious disease.   

In order for clinicians to practice and patients to receive palliative services in a manner that is consistent with its intent, it must be systematically recognized both nationally and locally. Large scale changes can happen through legislation, which is now sorely needed to help educate our new generation of health care providers. 

Of the recent legislation that has found the most traction, HR 1339 was introduced to congress last year. The Palliative Care and Hospice Education and Training Act amends the Public Health Service Act to direct the HHS Secretary to award grants or contracts for the establishment or operation of palliative care and hospice education centers. Actions proposed in the bill include improved training of health professionals in palliative care for individuals with serious or life-threatening illnesses as well as continuing education of health professionals who provide palliative care.

The number of patients who need this level of care is mounting. Medical systems across the country have an obligation to — at the very least — offer palliative care to patients who are suffering with an illness that won’t subside. But to do this effectively, congruent programs and initiatives to train individuals in providing palliative care in health-related settings must be made available.

As our nation collectively searches to find ways to address the needs of the patients who need medical intervention the most, palliative care may be the likeliest solution of all. 

California -- Thanks to Dooley -- Ahead of the Curve

When it comes to public policy around end-of-life care, state and federal policymakers have been in very different places. At the federal level, good end-of-life care became associated with “death panels” and turned the topic into a political “third rail.” Here in California, the public barely noticed the federal rhetoric, so our state policymakers never “went dark” on the issue.

This year, a number of state legislators introduced end-of-life related legislation. Proposals ranged from providing people with information, to establishing registries for treatment wishes, to making palliative care more available.

But the one policymaker who has had the biggest impact in California in the last few years is Diana Dooley, secretary of the California Health and Human Services Agency. Dooley recognized that good end-of-life care is part of “health across the life span.” She put end-of-life care on par with both childhood health issues and chronic conditions.  Through Let’s Get Healthy California and the California State Innovation Model (Cal SIM), Dooley has made it safe for other state policymakers to address the topic.

The changing tide at the federal level is simply a reflection of the fact that dealing with end-of-life policy issues is inevitable. It is part of the natural evolution of our health care system and aging society. 

Devoting ever increasing resources and expertise focused on smaller and smaller things is a hallmark of our health system. Through this approach we have developed vast and extensive scientific knowledge.  At some point, however, this approach exceeds its financial viability.  And even more importantly, fails to meet needs of many patients, which is to live their fullest life possible. Palliative care looks at people holistically to help them live their lives.

As more and more of us grow older, or have loved ones who are older, end-of-life care becomes a topic that’s on our minds and for which we need positive, healthy models.

Large Purchaser Approaches to Advance Care Planning

The critical need for patients and their caregivers to talk about their personal preferences for palliative care and life-sustaining treatment has often been lost in the rhetoric that surrounds “death panels” and debate about Medicare reimbursement for advance care planning. Fortunately, large purchasers have been at the forefront in providing coverage for palliative and hospice care despite this negative press.

This issue not only affects older Americans, but employees and family members facing a life-threatening illness, as well as caregivers of aging parents or dependent children with complex illnesses.

While hospice care is generally associated with end-of-life support, both the growth in debilitating multiple chronic conditions and availability of treatment interventions for complex medical conditions give greater urgency to consideration of palliative care during different stages of illness. Palliative care focuses on relief from the symptoms, pain, and stress of chronic conditions and serious illnesses with the goal to improve quality of life for both the patient and the family/caregivers.

Employee assistance programs (EAP) and behavioral health coverage are two examples of employer-based programs that provide supportive resources to employees and their dependents. Second opinion and treatment option decision support vendors can also supply important navigational support to employees and caregivers in making optimal choices for themselves or loved ones. Beyond affecting workplace productivity and absenteeism, these services impact overall employee well-being by providing better information about treatment outcomes, risks, as well as financial planning for potential out-of-pocket costs. 

“Employers cannot erase the tremendous challenges that employees face as caregivers or during a health crisis. However, they can foster a positive and empowering environment that supports employees with the plans and tools that will help ease this burden,” writes Brent Pawlecki in a recent Health Affairs blog.

As Chief Health Officer at The Goodyear Tire & Rubber Co., Pawlecki has approached creating a culture of health broadly through health benefits, wellness, safety and emergency preparedness. The continuum of service and support includes a Planning for the Future toolkit and home mailings about advance care planning in conjunction with National Healthcare Decision Day. 

The Conversation Project is another initiative that has been embraced by large employers such as Dow Chemical as part of a broader effort to foster frank conversations about end-of-life care with family and friends before a health crisis occurs. The Conversation Project provides a starter kit in multiple languages to help individuals begin an advanced care planning dialogue with family and friends, and then progress to a conversation with health care providers.

These are just two ways in which large purchasers are approaching the challenging issue of advance care planning.

Palliative Care: A No-Brainer

It’s hard to imagine what goes through the mind of a person faced with a serious terminal illness. I suspect among the range of emotions is the desire to fight like heck to beat it. And why not?  Here in the United States we’ve made some of the greatest medical advancements in the world. 

But for many who want the best quality of life possible in their final years and relief from debilitating pain, a person with this type of serious condition must make the difficult decision to forgo curative treatment in order to obtain “comfort care,” or hospice-type services typically available only in the last six months of life. This results in physician referrals to hospice far too late in the course of the illness. 

Palliative care offers many of the same services as hospice but earlier in the disease state and it doesn’t require “giving up” the fight to beat the illness. Numerous studies have been published demonstrating evidence that palliative care leads to better outcomes, higher patient satisfaction, and lower health care costs. 

California’s Medicaid program (Medi-Cal) provides health coverage for approximately 7.5 million people who are aged, disabled or have low-incomes. The numbers served by the program are expected to increase with expansion of the program under the federal Affordable Care Act. In Medi-Cal, like Medicare, palliative care isn’t widely available today.

In 2006, California created a Medi-Cal Pediatric Palliative Care pilot project. Preliminary analysis indicates the program improves quality of life for participating children and their families, average days in the hospital have been reduced, and shifting care from hospitals to in-home community based models has resulted in savings of $1,677 per child per month on average.

More and more health care professionals and administrators are recognizing the benefits of palliative care for seriously ill patients, but this benefit shouldn’t be limited to pilot projects. I have authored SB 1004 to promote and expand the use of proven palliative care services for those in the Medi-Cal program who can benefit from such services.  SB 1004 establishes palliative care standards and technical assistance for Medi-Cal managed care plans, which serve more than half of all people in the Medi-Cal program. It is a service which should be encouraged for any age and any stage of a serious illness. SB 1004 overwhelmingly passed the Legislature and is awaiting the Governor’s signature.