2022 Namey/Burnett Preventive Medicine Writing Award second-place winner Lissie Arndt, PhD, OMS-IV, clarifies the difference between palliative care and hospice and advocates for osteopathic family physicians to discuss advance care planning with their patients earlier.
Lissie Arndt, PhD, OMS-IV | Michigan State University College of Osteopathic Medicine
2022 Namey/Burnett Preventive Medicine Writing Award Winner, Second Place
Sponsored by the ACOFP Foundation, with winners selected by the ACOFP Health & Wellness Committee, the Namey/Burnett Preventive Medicine Writing Award honors the memory of Joseph J. Namey, DO, FACOFP, and John H. Burnett, DO, FACOFP—dedicated advocates for osteopathic medicine—and recognizes the best preventive medicine blog posts submitted by osteopathic family medicine students and residents.
On the surface, talking to patients about death and dying may seem antithetical to the lifesaving principles of medicine, let alone preventative medicine. But, as a fourth year medical student aspiring to emulate her many osteopathic family physician mentors who take into account their patients’ physical, emotional and spiritual wellbeing, I believe such conversations about dying are an essential in primary care for the living.
Though death is always lurking in the shadows at the hospital, hidden between the lines of board review question vignettes, and tucked away in the corners of our own memories, it is not something that is readily and openly discussed in medical school—or many healthcare settings for that matter. United in our shared purpose of sustaining life, it is taboo for healthcare providers to discuss the end of it. But no matter how far medicine has advanced, each and every human does eventually die, and it wasn’t until I started a palliative care rotation that I had to stare that realization in the face and recognize my own inadequacy at being able to talk about death with patients.
The Problem: Not Talking about Dying is Harming Patients
While it feels uncomfortable—even discouraging—to talk to patients about death and dying, not talking about it has done real harm to them as now many Americans are finding themselves wholly unprepared for negative health outcomes. While nearly 40% of adult medical inpatients and hospice residents and over 90% of intensive care patients lack decisional capacity, only 20%–29% of Americans have completed an advanced directive documenting their treatment wishes should they find themselves in that situation.1
As a result of this inadequate advance care planning, patients bear significant and unnecessary burdens and often receive care discordant with their values. While approximately 80% of Americans express a preference to die at home, only 20% ever do; instead, 60% die in acute care hospitals and 20% die in nursing homes.2 And patients are not the only ones who suffer from this lack of planning—approximately one-third of patients’ surrogate decision makers have borne negative emotional burdens from making treatment decisions, including stress, guilt and doubt over the decisions they have had to make on behalf of their loved ones.3
In addition to these significant emotional burdens, inadequate advance care planning also leads to undue financial burdens for patients, their families, and the healthcare system as a whole. Approximately 33%–38% of patients near the end-of-life receive non-benefiting treatments, defined as treatments “administered with little or no hope of it having any effect, largely because of the underlying state of the patient’s health and the known or expected poor prognosis regardless of treatment.”4 Furthermore, patients who did not utilize hospice services incurred as much as $27,455 in additional healthcare costs in comparison to patients who received hospice care earlier and were 10 times more likely to be hospitalized.5 To make matters more frustrating, only 7% of hospice-eligible patients are referred for early hospice care, demonstrating the profound underutilization of hospice services for patients and their families.5
COVID-19 has only widened the chasm between the need for advance care planning and the reality of its provision. Since the pandemic began, more than 50 million people in the United States have been infected with COVID-19 and more than 800,000 have died because of it.6 The unique challenges of providing intensive care for COVID-19 patients, such as mechanical ventilation, makes advance care planning discussions with patients and their families even more vital. Although rates vary by hospital, one meta-analysis found that the average mortality rate of patients with COVID receiving invasive mechanical ventilation was 45%, with rates further stratified by age of 47.9% for younger patients of aged 40 or older and up to 84.4% for patients aged 80 or older.7 Given the difficulty of successfully resuscitating a patient in respiratory failure who goes into cardiac arrest, these honest, yet compassionate, code status discussions with patients and their families become imperative. According to another meta-analysis of the mortality rates of in-hospital resuscitation attempts (IHCA) of patients with COVID, only 32.9% achieved return of spontaneous circulation and 89.9% did not survive at 30 days or to hospital discharge after IHCA and CPR.8 This is not to say that CPR should not be attempted if that is what the patient or their surrogate decision maker(s) wish, only that this might further inform their decision processes as they weigh the benefits and burdens of such resuscitation efforts for their loved ones.
The Solution: Recognizing Advance Care Planning as the Preventative Medicine That It Is
Though the multifaceted and systemic nature of inadequate advance care planning makes it a daunting issue to face, it also means there are multiple ways to address it, and I believe osteopathic family medicine physicians may play a pivotal role in doing so. First and foremost, the completion of advanced directives must be recognized as the preventative medical service that it is, and thus should be included as a quality measure and covered entity of both health maintenance visits and hospital follow up visits for all adults. A family physician’s longitudinal relationship and established report with their patient ideally positions them to discuss with them and document advance care planning and advocate for their end-of-life care wishes to be upheld.9 In contrast to the 17% of patients who say they have had end-of-life treatment discussions with physicians, 89% say they want physicians to have such discussions with them.10
But in order for family physicians to be better equipped to have these difficult discussions with patients, more education dedicated to palliative and hospice care is needed in medical school, residency, and continuing medical education programs.11 Over 50% of primary care providers, and many other healthcare professionals (including myself until recently), erroneously conflate palliative care with hospice, but there are several important differences between the two.11 While the chief purpose of both palliative and hospice care is to enhance a patient’s quality of life when they have a serious illness, a patient does not need to have a life expectancy of fewer than six months for palliative care, as they often do for hospice, and palliative care services may even include monthly home visits to provide treatment and prevent repeat hospitalizations in severely deconditioned patients. Though patients cannot have curative treatments while on hospice, they can still have any palliative treatments (such as feeding tube placement and antibiotics) that would ease their discomfort, and they can continue to be treated for their chronic conditions like diabetes and hypertension. Significantly, patients can still be full code for both hospice and palliative care, although the benefits vs. burdens of such resuscitative efforts should be thoroughly discussed with patients. For a more thorough differentiation between palliative care and hospice, please see Table 1 from the National Hospice and Palliative Care Organization included at the end.12
But giving primary care providers one more task on a long checklist during a patient visit is insufficient. Given the gravitas of advance care planning discussions, primary care providers should be better compensated for them than they currently are by Medicare, which currently only covers them as an optional component of their Medicare wellness visit or as a separate Medicare Part B medically necessary service (for which Part B cost sharing applies).13 Standardized, low-literacy friendly and multi-lingual advanced directives, such as the free ones provided by Prepare for Your Care14, would also increase their rate of completion, as the poor readability of many of these forms make them intimidating or incomprehensible for many patients.15 Lastly, an ideal solution, if partial, would be to have a national database of advanced directives—similar to state immunization registries—that is accessible to all healthcare providers as well as to patients to ensure that their treatment wishes are being upheld no matter where they seek care.16 And, as I have learned from my mentors, none of these changes are possible without formal advocacy efforts, for which osteopathic family medicine physicians, residents, and even medical students are perfectly suited to lead.
At the end of the day, advance care planning truly is preventative medicine because it prevents undue hardship and suffering for patients and their families. By talking to patients about their wishes for their end-of-life treatment, family physicians can help them recognize what is most important to them in their life and determine how, by whatever measure they choose, they wish to live it to its fullest.
Special thanks to Lauren Camargo for opening my eyes to the importance of advance care planning.
Table 1: Palliative Care vs. Hospice
Source: National Hospice and Palliative Care Organization (2019), used with written permission.12
|What is the focus?||Palliative care is not hospice care. It does not replace the patient’s primary treatment; instead, palliative care works together with the primary treatment being received. It focuses on the pain, symptoms and stress of serious illness most often as an adjunct to curative care modalities. |
It is not time limited, allowing individuals who are “upstream” of a six-month or fewer terminal prognosis to receive services aligned with palliative care principles. Additionally, individuals who qualify for hospice service—and who are not emotionally ready to elect hospice care—could benefit from these services.
|Hospice care focuses on the pain, symptoms and stress of serious illness during the terminal phase. The terminal phase is defined by Medicare as an individual with a life expectancy of six months or fewer if the disease runs its natural course.
This care is provided by an interdisciplinary team who provide care encompassing the individual patient and their family’s holistic needs.
|Who can receive this type of care?||Any individual with a serious illness, regardless of life expectancy or prognosis.||Any individual with a serious illness measured in months not years. Hospice enrollment requires the individual has a terminal prognosis.|
|Can my patient continue to receive curative treatments?||Yes, individuals receiving palliative care are often still pursuing curative treatment modalities. |
Palliative care is not limited to the hospice benefit. However, there may be limitations based on their insurance provider.
|The goal of hospice is to provide comfort through pain and symptom management, psychosocial and spiritual support because curative treatment modalities are no longer beneficial. Hospice should be considered at the point when the burden of any given curative treatment modalities outweighs the benefit coupled with prognosis. Based on individual patient situations, other factors to consider and discuss are treatment modalities that no longer provide benefit due to a loss of efficacy.|
|What services are provided?||Pain and symptom management, in-person and telephonic visits, assistance in navigating treatment options, advance care planning and referrals to community resources.||Pain and symptom management, 24-hour on-call service, in-person visits, medical equipment, related medications, inpatient care, continuous care in the home, respite care, volunteer services, spiritual care, bereavement and counseling services.
There are four levels of care that can be provided to patients per CMS regulations (routine, inpatient, continuous and respite care).
|Where are services provided?||Palliative care may be provided in any care setting, including:||Hospice care can be provided in most care settings.
|Who provides these services?||Palliative care may be provided by an interdisciplinary team. However, most palliative services are provided by a physician, nurse practitioner or nurse with consultative support from social worker and chaplaincy services. |
These services are performed in collaboration with the primary care physician and specialists through consultative services or co-management of the patient’s disease process.
|Hospice care is provided by an interdisciplinary team that is led by a physician and includes nurses, social workers, chaplains, volunteers, hospice aides, therapy disciplines and others.
These services are performed in collaboration with the attending physician.
|What types of healthcare organizations may provide these services?||Palliative care is not dependent on care setting or type of medical practice. Services are performed in collaboration with the patient’s primary care physician, other specialists, and healthcare settings where they may be receiving services. ||Hospice organizations include:
|How long can an individual receive services?||Palliative care is not time limited. How long an individual can receive care will depend upon their care needs, and the coverage they have through Medicare, Medicaid, or private insurance. |
Most individuals receive palliative care on an intermittent basis that increased over time as their disease progresses.
|Hospice care may continue as long as the individual patient meets Medicare, Medicaid or their private insurer’s criteria. This is measured in months, not years.|
|Does Medicare pay?||Palliative care is covered through Medicare Part B. Some treatments and medications may not be covered. May be subject to a copay, according to the plan.||The Medicare hospice benefit pays all related costs associated with the care that is related to the terminal prognosis as directed by CMS. There may be some medications, services and/or equipment that are not included in the Medicare hospice benefit.|
|Does Medicaid pay?||Palliative care is covered through Medicaid. Some treatments and medications may not be covered. |
May be subject to a copay, according to the plan.
|In most states, Medicaid pays all related costs associated with the care related to the terminal prognosis as directed by CMS. There may be some medications, services and/or equipment that are not included in the Medicaid hospice benefit.|
|Does private insurance pay?||Most private insurers include palliative care as a covered service. Each payer is different, and their palliative services will be outlined through the insurer’s member benefits. Some treatments and medications may not be covered. May be subject to a copay, according to the plan.||Most private insurers have a hospice benefit that pays all related costs associated with the care related to the terminal prognosis. There may be some medications, services and/or equipment that are not included in the individual’s policy. May be subject to a copay, according to the plan.|
|When should I refer?||Patients with advanced chronic illness who have received maximum medical therapy and are at-risk of using the hospital for decompensation.||If you would not be surprised if this patient died within the next 12 months, they are likely appropriate for hospice care. Additionally, patients who have received maximum therapy and their focus has shifted to symptom management and comfort care.|
- DeMartino ES, Dudzinski DM, Doyle CK, et al. Who decides when a patient can’t? Statutes on alternate decision makers. N Engl J Med. 2017;376(15):1478-1482. doi:10.1056/NEJMms1611497
- Stanford School of Medicine. Where do Americans die? Palliative Care: Education & Training. Published April 21, 2013. Accessed December 27, 2021. https://palliative.stanford.edu/home-hospice-home-care-of-the-dying-patient/where-do-americans-die/
- Wendler D, Rid A. Systematic review: the effect on surrogates of making treatment decisions for others. Ann Intern Med. 2011;154(5):336-346. doi:10.7326/0003-4819-154-5-201103010-00008
- Cardona-Morrell M, Kim J, Turner RM, Anstey M, Mitchell IA, Hillman K. Non-beneficial treatments in hospital at the end of life: a systematic review on extent of the problem. Int J Qual Health Care. 2016;28(4):456-469. doi:10.1093/intqhc/mzw060
- Trella Health. Quantifying Hospice’s End-of-Life Impact. Published 2020. https://2k5mvxeyf44ix5rc3b9wsy11-wpengine.netdna-ssl.com/wp-content/uploads/2020/07/Trella_Hospice-End-of-Life-Impact-Study_REV4-1.pdf
- CDC. COVID Data Tracker Weekly Review. Centers for Disease Control and Prevention. Published December 17, 2021. Accessed December 7, 2021. https://www.cdc.gov/coronavirus/2019-ncov/covid-data/covidview/index.html
- Lim ZJ, Subramaniam A, Ponnapa Reddy M, et al. Case fatality rates for patients with COVID-19 requiring invasive mechanical ventilation. A meta-analysis. Am J Respir Crit Care Med. 2021;203(1):54-66. doi:10.1164/rccm.202006-2405OC
- Ippolito M, Catalisano G, Marino C, et al. Mortality after in-hospital cardiac arrest in patients with COVID-19: A systematic review and meta-analysis. Resuscitation. 2021;164:122-129. doi:10.1016/j.resuscitation.2021.04.025
- Myers JM, Duthie E, Denson K, Denson S, Simpson D. (2017). What can a primary care physician discuss with older patients to improve advance directive completion rates? A clin-IQ. J Patient Cent Res Rev. 2017;4(1):42–45. doi:10.17294/2330-0698.1412
- DiJulio B, Firth J, Brodie M. Kaiser Health Tracking Poll: September 2015. Kaiser Family Foundation. Published September 30, 2015. Accessed December 28, 2021. https://www.kff.org/health-costs/poll-finding/kaiser-health-tracking-poll-september-2015/
- Snyder S, Hazelett S, Allen K, Radwany S. Physician knowledge, attitude, and experience with advance care planning, palliative care, and hospice: Results of a primary care survey. Am J Hosp Palliat Care. 2013;30(5):419-424. doi:10.1177/1049909112452467
- National Hospice and Palliative Care Organization. Palliative Care or Hospice? The right service at the right time for seriously ill individuals. Published 2019. Accessed December 27, 2021. https://www.nhpco.org/wp-content/uploads/2019/04/PalliativeCare_VS_Hospice.pdf
- Centers for Medicare and Medicaid Services. Advance Care Planning. Medical Learning Network. Published 2020. Accessed December 27, 2021. https://www.cms.gov/outreach-and-education/medicare-learning-network-mln/mlnproducts/downloads/advancecareplanning.pdf
- PREPARE. Prepareforyourcare.org. Accessed December 28, 2021. https://prepareforyourcare.org/en/welcome
- Castillo LS, Williams BA, Hooper SM, Sabatino CP, Weithorn LA, Sudore RL. Lost in translation: the unintended consequences of advance directive law on clinical care. Ann Intern Med. 2011;154(2):121-128. doi:10.7326/0003-4819-154-2-201101180-00012
- US Advance Care Plan Registry. About us. USACPR. Published 2021. Accessed December 28, 2021. https://www.usacpr.net/information/about-us/