Case managers working in acute and outpatient settings have probably heard about palliative care a lot recently with the increased penetration of palliative care programs across the United States and especially in acute care hospitals. This article will highlight some of the important aspects of palliative care, its relationship with hospice, reimbursement, and coordination with other aspects of patient care in the last chapter of life.
First a bit of history. We are led to believe by some in the industry that palliative care is relatively new. The truth is that hospice is a form of palliative care, and its roots date back to the first program in the United States in 1974 in Connecticut. Hospice is essentially the end-stage version of palliative care that covers the spectrum from diagnosis of a serious illness to death. This relationship with the origins of hospice is both a blessing and a curse. A blessing in that comfort-focused care should be a part of any patient’s treatment plan when facing a serious illness. A curse in that patients, families, and most healthcare professionals think palliative care is just another way – a softer, gentler way – to say you’re dying, leading to resistance on the part of all involved, and to initially reject palliative care when suggested. Adding more confusion to the mix is the fact that most hospice programs will have the word “palliative” in their names—as you will see in this author’s bio. This leads to physicians, and others who might be in a position to refer to palliative care, to describe it as “Hospice Light” or that it is just like hospice without the restrictions. Leadership organizations and most doing palliative care define it as “specialized medical care for people living with a serious illness. This type of care is focused on providing relief from the symptoms and stress of the illness. The goal is to improve quality of life for both the patient and the family” (https://getpalliativecare.org/whatis/). A better, simpler definition might be palliative care is “really good medical care.”
One unintended consequence of a referral to palliative care, unfortunately, may be a delay in a referral to hospice – which is the care the patient and family system actually need.
It has been said if you have seen one palliative care program, you’ve seen one palliative care program. Organizations like the Center to Advance Palliative Care, or “CAPC” for short, have really done the yeoman’s work necessary to educate, train, and clarify the messaging of palliative care for the benefit of healthcare professionals. Over the past 20 years, the expansion of palliative care programs in hospital and community settings has grown and flourished. We now have subspecialty board certification for hospice and palliative care for physicians. Formal certification programs also exist for nurse practitioners, nurses, social workers, and chaplains. Thankfully, the field of palliative care is rapidly growing across the healthcare continuum.
Case managers will benefit from greater education and training on the value of palliative care across the continuum of care for their patients and families. They should recognize first and foremost that palliative care can and should be considered at the initial diagnosis of a serious illness. Remember, palliative care is related to hospice, but it is not hospice.
The Medicare Hospice Benefit as the gold standard of hospice care is often the basis for private and public insurance providers hospice benefit as well. The benefit is reimbursed on a per diem basis for the following: hospice team consisting of physicians, nurses, bathing aides, social workers and chaplains, support volunteers and bereavement support for the patient’s family following the patient’s death at the minimum, medications related to the terminal diagnosis, supplies for wound care and incontinence and durable medical equipment, again at the minimum. Some hospice programs will add extra services like massage, music therapy, etc. This care is available to patients who meet specific criteria – indefinitely. For example, the initial certifying criteria are 6 months life expectancy or less and, as long as the person is “still dying” from their terminal illness, they can continue to be recertified to receive hospice services. This basket of services has been around since 1983, serving millions of patients and their families.
Reimbursement for palliative care is very complicated. Case managers familiar with the Medicare Hospice Benefit will expect a similar “basket of services,” only to be disappointed. Medicare patients specifically are used to receiving a basket of services only to be left holding bills for things they thought would be covered.
Costs to provide palliative care range from free. These are mostly programs that are associated with an established hospice provider. The expectation is that many patients will transition to hospice after a period of time on their palliative care program. The services available for free will range from staffing only, to a more complete basket of services. Some patients and families will frequently feel pressure to transition to hospice. Many patients referred to palliative care are actually hospice patients who are just not ready to sign the paperwork validating their serious illness.
Other palliative care programs—especially those in hospital or skilled settings—are fee for service and will focus on specific tasks. Case managers in hospital and medical settings, in general, will appreciate that patient and family will finally receive “goals of care conversations” from trained physicians, physician assistants, nurse practitioners, and social workers. Their agenda is primarily education about comfort-focused care, readiness for hospice transition, and addressing code status and intensity of care desired. Assessments in the hospital setting are valuable as they set the stage for discharge to the right level of care desired, reduce the length of stay, and clarify treatment desired with treatment being provided. The challenge in accessing palliative care in this setting is often turf-related issues. Palliative care specialists are consultants, and not usually the primary care practitioner, although many hospitalists often are board-certified in hospice and palliative medicine. Patients wanting to continue treatment focused on curative modalities versus comfort are those most likely to benefit from ongoing support on palliative care.
Private insurance entities have recognized the value of palliative care and are beginning to reimburse for this service often on fee for service and sometimes a monthly fee for a basket of services. Most payers are hesitant to provide anything similar to the Medicare Hospice Benefit since they don’t want to incentivize the patient not to choose hospice when it’s clearly appropriate.
The availability of a palliative medicine practitioner and a palliative care program are often seen as a way around having a difficult conversation with the patient and their family. Kicking this can down the road leads to late hospice referrals. Case managers should be aware of this and specifically request that goals of care and code status must be addressed. Additionally, in states with POLST (Physician Orders for Life-Sustaining Treatment) Paradigm programs, case managers should encourage the completion of the documents even if the most aggressive conservative selections are chosen. The reason being, at very minimum, it will show and memorialize that a conversation on these issues was completed. These brightly colored documents could be used in the initial palliative medicine consult as a way of ensuring the issues are addressed by someone with the skill and finesse to address them. A POLST form addresses code status, the intensity of care desired, and artificial feeding. Just think of how much easier end of life care can be if these questions are addressed directly with a patient and their family before the crisis unfolds.
In survey after survey, hospice patient families will state that they wish they had known about hospice services earlier. Patients dying within a few days of admission to a hospice program does the patient very little good beyond the crisis unfolding, yet reinforces the perception that hospice is “just about death.” Palliative care is a bridge of understanding and a way to ensure that the patient has access to the care and resources needed to address distressing symptoms like pain and the very real emotional suffering they experience. Early referral to palliative care sets the stage to enable the patient and family to transition smoothly to end of life care with hospice when they are ready.
Finally, palliative care is more than just managing pain. A common refrain is that palliative medicine physicians have an inner social worker guiding them through the bio-psychosocial needs of the patient AND the family. A referral to a pain management specialist may miss the needs of the whole patient and place them in the crosshairs of the limitations birthed by the opiate crisis in this country. Some physicians may understand this dilemma; others may unnecessarily limit aggressive pain management fearing fostering drug-seeking behavior and using the word “addiction” in any verbalized sentence. This is inappropriate and cause for immediate dismissal of this consultant altogether and a prompt referral to a palliative medicine specialist. Patients with a serious unfolding illness have many distressing symptoms beyond just pain, and engaging with a specialist who gets this is crucial. Case managers should use their voices and demand “good medical care” because now you know too!
Palliative care programs will continue to grow across the country and the continuum of care. Case managers’ knowledge and understanding of this extremely valuable resource for their patients and families will help make their job a little easier when dealing with our most vulnerable at the end of their lives.
Below are some internet-based resources for information on palliative care and related services.
CAPC – Center to Advance Palliative Care www.capc.org
Get Palliative Resources for patients and providers www.GetPalliativecare.org
American Academy of Hospice and Palliative Medicine- www.aahpm.org
POLST National Paradigm www.polst.org
, PhD, LCSW, CCM, has nearly 40 years of experience working with dying patients and their families. He is a recognized national speaker and author on the topics related to care at the end of life. Working as a social work case manager with Memorial Care Hospice and Palliative Services in Southern California, he visits patients in their hospital inpatient program as well as home-based patients in the surrounding community.
Michael recently co-authored and published “Dying 101: A Candid Conversation on Terminal Illness” – available on Amazon and Kindle and through the website https://www.thedying101.com/. Please also visit the YouTube Channel from this website to see and hear the topics discussed in Commentaries on Dying 101.
