Strengthening support for patients with advanced illness
by Daniel Johnson, MD, FAAHPM
Featured in the May/June 2016 Colorado Medicine.
- Palliative care is specialized medical care for people with serious illnesses; it is focused on providing patients with relief from the symptoms, pain and stress of serious illness to improve the quality of life for both the patient and the family.
- Expanding primary and specialty palliative care support is critical to ensure consistent access to high quality advanced illness support. Through combined research, policy, education, payment and practical approaches, expanding palliative care support across Colorado will improve the quality of care while bending the cost curve.
- The issue of physician-assisted death and is often a divisive, polarizing issue for reasons that include personal, religious, cultural and practical values. There will never be a single solution that will satisfy every stakeholder, but most agree that we must create better, more consistent and more reliable systems of end-of-life support
Nellie looked older than age 59. Despite a youthful spirit, her body was tired – a physique failing from the ravages of long-standing COPD, diabetes and progressive frailty. Nellie loved life – or at least she used to – before her afflictions stripped her of independence and the one thing she loved most: time with her family. She was short-changed the latter luxury on account of four lengthy hospital admissions in just three months. Still, Nellie managed a bright smile as she shared her story of teaching Ray, her 7-year-old grandson, how to paint (something now too taxing given severe breathlessness with even the trivial exertion of raising the paintbrush to canvas).
Nellie’s words later that evening in the ICU should not have caught me off guard, but they did. As a then-medical sub-intern, I was scared. I sensed something was coming, and I’m sure Nellie read my trepidation. When the moment came, she reached out, held my hand, and declared: “Dr. Johnson, I’m taking off my oxygen. I’m ready to die now.”
It was at that moment that I realized how unprepared I was to support Nellie. Almost nothing in my training had taught me how to respond – what to say next – or how to bring her comfort. My mind swirled with questions. Can’t we do something more? Was she depressed? How could I just allow her to die? Worse yet, what if I actually stop her? I had so much more to learn.
Although Nellie’s journey – now nearly 20 years ago – is not one of “physician-assisted death” (i.e., a terminally ill patient’s ingestion of a lethal dose of a prescribed medication), the parallels are striking. Her experience mirrors many of the major findings of the Oregon PAD experience. Nellie wanted control of her own death. She worried about losing herself – her dignity – and feared she had become a burden to those whom she most loved. Nellie wasn’t depressed, she just wanted death to come so that she could stop worrying about dying.
Over the past two years, I’ve had the opportunity to talk with many Coloradans – ill people, caregivers, doctors, clinicians, lawyers, legislators and others – about PAD. Several things are clear. PAD stirs much passion. It’s also often a divisive, polarizing issue for reasons that include personal, religious, cultural and practical values. There will never be a single solution that will satisfy every stakeholder.
When I find myself in a difficult family meeting facing similar circumstances, I rely on “principled negotiation” – skilled, respectful dialogue aimed at finding common ground. Regardless of PAD preferences, I’ve observed diverse stakeholders express a common and consistent theme: we must – both as a medical profession and society – create better, more consistent and more reliable systems of end-of-life support.
Enter palliative care. Palliative care (PC) is specialized medical care for people with serious illnesses. This type of care is focused on providing patients with relief from the symptoms, pain and stress of serious illness, whatever the diagnosis. The goal is to improve the quality of life for both the patient and the family. PC is provided by a team of physicians, nurses and other specialists who work with a patient’s other health care providers to provide an extra layer of support. It is appropriate at any age and at any stage in a serious illness and can be provided together with curative treatment.(1)
Too often the term palliative care is considered synonymous with “end-of-life care” but in reality, PC provides personalized, team-based support for patients across the broad trajectory of serious illness. Some patients may be undergoing curative treatments with many years or more to live. Others may be close to the end of life, but not yet ready or wanting traditional hospice support. Studies have shown that answering “no” to the question “would you be surprised if this patient died in the next year” identifies individuals who might be at particularly high risk for having unmet palliative needs.
Another common misconception is that palliative care is synonymous with hospice care. While both share a focus on quality of life, hospice is one type of PC. Hospice care is provided under the Medicare Hospice Benefit (MHB). For a person to be eligible for hospice services, the patient’s physician must certify that the person’s life expectancy is less than six months, and the patient must elect to forego further life-prolonging therapies. Hospice support is delivered across many settings: home, assisted living, nursing home, hospital and free-standing hospice facilities. For people not yet ready or eligible for hospice services, PC services can provide a much needed extra layer of support.
Importantly, not all palliative support is considered to be specialty palliative care. As with any medical discipline, certain core elements of PC, such as aligning treatment with a patient’s goals and basic symptom management, should be routine aspects of care delivered by any practitioner. This type of support is described as “primary” or “generalist” PC. Given a growing shortage of PC specialists, closing the gap to ensure consistent, high quality advanced illness care will require extensive primary PC education.(2)
Other skills are more complex and take years of training to learn and apply, such as negotiating a difficult family meeting, addressing veiled existential distress and managing refractory symptoms. Specialty PC teams leverage the expertise of palliative-trained and certified physicians, nurse practitioners, nurses, social workers, chaplains, pharmacists and others. Specialty PC has been shown to increase patient/family satisfaction, reduce pain and symptom distress, support complex decision-making, increase longevity and reduce acute care utilization and total costs.
A growing number of organizations and communities offer PC services. More than 70 percent of hospitals with more than 50 beds offer specialty PC consultation.(3) Team composition varies widely, but often will include some combination of physicians, nurses, social workers, chaplains and/or pharmacists, among others. Most inpatient programs do not yet offer 24/7 access to specialty PC support.
Access to outpatient specialty PC services is much more limited despite growing evidence of Triple Aim efficacy. Some hospice programs offer community-based PC services in home, nursing home, assisted living or other community settings. Unfortunately, these programs are often small as a result of inadequate staffing and limited resources. Only five of Colorado’s 47 rural and frontier counties have any access to specialty PC services from a hospital or hospice facility.(4)
Insufficient insurance reimbursement is a major barrier to specialty PC access. Outside the MHB, Medicare does not yet offer a specific palliative care benefit. While PC physicians and nurse practitioners may code for consultative services, team-based care is not incentivized or reimbursed. A growing number of insurance companies and health plans offer limited PC benefits and services. Accountable Care Organizations and bundled payment models should encourage PC growth given clear data showing improved outcomes at lower costs.
In summary, regardless of whether Colorado passes PAD legislation, investing in more robust primary and specialty PC support is critical to ensure consistent access to high quality advanced illness support. It is our common ground. Through combined research, policy, education, payment and practical approaches, expanding PC support across Colorado will improve the quality of care while bending the cost curve.
Reflecting on my early experiences, I now appreciate the gift that Nellie left me. Her honest words taught me respect for end-of-life’s often delicate balance of quality and quantity. She helped me to appreciate the critical importance of creating a safe space for authentic dialogue – ongoing conversations that ensure that the care delivered is consistent with what matters most to our patients and their loved ones.
Nellie was fortunate to have an “easy out”– an opportunity to end her life by foregoing further life-sustaining treatments. Many, if not most, of us will be afforded the same opportunity. Nellie passed away naturally only two hours after removing her oxygen. She died comfortably with her family at her side. All were at peace with her decision.
1 Centers to Advance Palliative Care. www.CAPC.org.
2 Quill TE et al. Generalist plus Specialist Palliative Care – Creating a More Sustainable Model. NEJM, 2013.
3 Centers to Advance Palliative Care. Growth of Palliative Care in U.S. Hospitals Snapshot. www.CAPC.org, 2015.
4 Center for Improving Value in Health Care (CIVHC). Palliative Care in Colorado. May, 2015.
HealthTeamWorks. Palliative Care Guideline. 2011.