Abstract
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Palliative care can enable persons with advanced serious illness and their families to experience enjoyment even as they and their family anticipate death or struggle with the unfairness of the situation. However, as suggested by Campbell 2 and consistent with Maslow's hierarchy of needs, 3 enabling enjoyment first requires management of distressing physical and psychological symptoms; hospice care or palliative care consults three days or even seven days before death are unlikely to achieve this management. Thus, to facilitate timelier referral to palliative care, much research focuses on more accurately predicting prognoses and identifying palliative care needs earlier.
In this issue of Journal of Palliative Medicine (JPM), three studies evaluate promising approaches for earlier identification of palliative care needs. Kenny et al. 4 in a small preliminary study present data on the ability of Palliative Performance Scale (PPS) to predict survival rates for hospital patients with diverse diagnoses admitted through the emergency room. They find that patients with the lowest PPS scores (30 or less) have a six-month survival rate of 14% and of 42.9% at three months, significantly lower than for patients with higher scores of 40–60 or 70–100. As the authors suggest, these low scores could potentially prompt emergency room physicians to engage palliative care consults; as another study has shown, this earlier engagement of palliative care could potentially avoid an intensive care unit stay. 5
Fasolino and Phillips 6 in another study in this issue of JPM focus on hospital patients with heart failure and suggest that an established Risk Readmission Assessment Tool (RRAT) can be helpful in identifying heart failure patients in need of palliative care. In this study, the RRAT score was calculated retrospectively for 565 heart failure patients using data from their first 2012 hospital admission. Seventy of the 565 (12%) patients had one or more subsequent hospitalizations. Although the RRAT score predicted high or moderate risk for hospital readmission for the vast majority of the 70 patients, only 10 (14%) were referred for palliative care consults. Therefore, considering hospital readmission as a likely indicator of patients in greatest need, the RRAT appears useful in targeting patients with the potential to benefit from palliative care.
Last, in this issue of JPM, Goldberg et al. 7 report on a related pilot study aimed at using a “Living with Cancer” patient reported outcome screening tool to assist oncologists in timing their end-of-life care/advance care planning discussions for patients with advanced cancer, and conversely to identify patients more open to engaging in such discussions. Indeed, this pilot found a correlation between screening tool scores and oncologists' assessments of whether continued curative therapy was appropriate, and an upper score identified the threshold where almost half of patients were already engaged in end-of-life care discussions or such discussions were contemplated by oncologists. Although the ideal is for all persons with advanced cancer to be engaged in advance care planning discussions, the authors view this tool as a potential palliative care and hospice referral aid for oncologists in addition to a tool for benchmarking oncologists' palliative care and hospice referral practices.
The research profile mentioned provides promise of useful tools to increase referrals to palliative care and hospice, and referrals substantially earlier than three or seven days before death. However, at least for nonhospice palliative care in hospitals and other settings, the workload increases accompanying increasing volume and earlier timing of referrals raises workforce shortage concerns, as discussed in September's JPM 8 and elsewhere. 9 To address this shortage, training of more palliative care specialists and strengthening the palliative care knowledge and skills of all providers caring for persons with advanced serious illness are recommended in the 2014 Institute of Medicine report, 10 and by others.8,9 Also, given the time needed to train palliative care specialist physicians, the limited supply of physicians generally, and the prominent (leadership) roles nurse practitioners have in many palliative care models, workforce expansion may be expedited with additional focus on the nurse practitioner workforce; greater palliative care access may be achieved by models in which the nurse practitioner's role is prominent.
To enable more widespread access to palliative care, we also need healthcare systems that routinely promote the provision of person-centered care 10 since person-centered care is fundamental to good palliative and end-of-life care. In many U.S. nursing homes, a healthcare sector that I study, such person-centered care environments exist as do palliative care models with prominent nurse practitioner roles. 11
Let us imagine the scenario changed, it is 2016 and “Mickey Sachs” has a life-threatening brain tumor and a resulting disability requiring a nursing home admission. Can his life still have meaning for him? Can he continue to enjoy life? There are nursing home environments where this is more likely. Nursing homes with hospice collaborations and where Medicare hospice is routinely used by residents near the end of life would be more likely to offer “Mickey” access to fundamental comfort from physical and psychological symptoms, that is, once he is eligible and enrolled in hospice. However, even if not on hospice, in such nursing homes “Mickey” would be likely to avoid unnecessary hospitalizations, since in nursing homes with greater hospice use, even nonhospice residents have fewer hospitalizations. 12 Given the large growth in hospice programs and hospice's reliance on an interdisciplinary team for care provision, it is available in most geographic locations and in the vast majority of nursing homes.
Prior to hospice enrollment or instead of, “Mickey” in some nursing homes can also access specialist palliative care for needed symptom management, and other support. These nursing homes may offer internal palliative care programs with specialist availability and/or they may rely on external specialists to provide palliative care consults. We recently studied such a nursing home consultation model, where palliative care consults are provided by nurse practitioner specialists (under physician supervision); based on findings, this model would likely help “Mickey” avoid end-of-life hospitalizations and other potentially burdensome end-of-life transitions (if the consult was timely). 13 Also, similar to other hospital and outpatient palliative care models, this consult model is associated with greater hospice use.
Returning back to “Mickey,” if he is fortunate enough to live in a nursing home with much hospice use and access to specialist palliative care, it is more likely that his advance illness is absent distressing symptoms and that he is avoiding unnecessary hospitalizations, but, can he really enjoy life while living in a nursing home? Most people do not think so. Thus, over 20 years ago a group of “pioneers” (the Pioneer Network) began a movement to change this thinking—to transform nursing homes into person-centered/-directed care environments where individuals can thrive. 14 Nursing home reform begun by the Pioneer Network is now commonly referred to as “nursing home culture change.”
Nursing homes that have for the most part implemented culture change practices are environments where preferences are routinely elicited and honored, where consistently assigned staff are more familiar with residents and their families and preferences, and where privacy is honored within homelike environments. In such environments, choices abound and a resident can watch a Marx Brothers movie if he or she wants, eat food he or she enjoys, bathe how and when desired, and have visitors 24/7. In nursing homes, comprehensive person-centered care models such as the Eden Alternative, 15 the Green House model, 16 and Planetree 17 offer structure and support for this nursing home transformation.
In hospitals, person-centered culture change is also needed to facilitate enjoyment and well-being for patients with advanced serious illness and their families. Many hospitals have begun or achieved this journey; in fact, 70 hospitals in the United States and internationally have been designated by Planetree 17 as being totally transformed patient-centered healthcare systems and this is encouraging.
In conclusion, the ultimate goal is to align assessment tools capable of identifying palliative care needs with workforce expansion and palliative care models and environments able to accommodate the (hopefully) resulting increase in palliative care referrals. Beyond symptom management, person-centered healthcare environments are needed to enable enjoyment even in the presence of advanced serious illness.