Goals-of-Care & Palliative Approaches

Goals of Care

The term goals of care is used rather ubiquitously within health care and has been shown to encompass 3 major themes in the literature, including 1) promotion of patient autonomy and patient-centered care; 2) avoidance of unwanted care and identification of valued care; and 3) provision of support for patients and their families.¹ Establishing an individual’s goals of care is core element of a more holistic palliative approach to care.

At the heart of any goals-of-care conversation is a serious illness conversation that aims to understand:

• the individual patient’s core values,
• what they understand about their conditions,
• what they might be willing to endure to gain more time,
• any ‘lines in the sand’ considered as nonnegotiable by the patient for an acceptable quality of life, and
• what abilities are considered so critical that they can’t imagine living without them.²

Because these conversations can be emotionally charged and are often not a skill set taught to clinicians, there are templates and checklists available to facilitate such conversations (Figure 1).

Although clinicians may worry that these types of conversations could be seen by individuals and their families as giving up hope or being too negative, there is evidence that serious illness conversations help improve quality of life, reduce aggressive medical care near death, and shorten referral times for hospice services when needed. Rather than increasing anxiety, depression, or hopelessness, surrogates find that having a realistic view of a patient’s prognosis allows them to better support the patient and one another. In contrast, giving a sense of false hope was viewed to be an unacceptable way to maintain hope.² These types of communications are considered a core component of a palliative approach to care.

Palliative Care

Although many still mistakenly conflate palliative care with end-of-life care, the truth is that palliative care is an approach to medical care for any patient with serious illness—at any stage of the disease. Palliative medicine is an approach to health care that focuses on pain relief and symptom management, psychosocial and spiritual support, and effective communication to improve the quality of life for individuals, their families, and care partners.^3,4 Key components of a palliative approach include 1) building a relationship, rapport, and trust with the patient and their family; 2) identifying and managing distressing symptoms; 3) eliciting the patient’s values; 4) helping patients and families cope with life-altering circumstances; 5) interpreting medical information to help ensure patients and their families understand their diagnosis, prognosis, and treatment options; 6) identifying and resolving conflict among family members and/or medical team members; and 7) planning for death or decline if warranted.⁵

Clinicians specializing in palliative care go through specialized training to help develop these skills and are essential partners in team-based palliative care for complex situations. Still, neurologists can learn and incorporate essential palliative care skills (eg, exploring values, goals and wishes for care, and provisions for symptom relief) into their routine practice to provide primary palliative care (PPC).⁶ Among the most essential of these skills is simply getting a better understanding of what an individual patient values and what brings them joy. Simply asking, “What makes life worth living for you?”, or “What brings you joy?” can begin building a framework that is useful for grounding complex medical decisions and navigating prognostic uncertainty. Having this framework can help provide perspective and guide discussion when exploring more directed questions such as “How much would you be willing to go through to get better?” and “What elements of your life do you feel you could not live without?” The framework of values and sources of joy is also helpful when broaching conversations about prognosis and significant medical decisions (eg, surgeries, tracheostomy, or feeding tubes). In the case of Mr Johnson, perhaps he was an individual that loved being outdoors and had told family he’d never want to be bed-bound or in a wheelchair life-long, or perhaps during his prior cancer treatments, he had made it clear he felt he’d want to continue any aggressive treatment—even with significant permanent physical disability—as long as his cognition was intact.

Neuropalliative Care for Stroke

Neurologic conditions, including stroke, are more likely to include significant long-lasting (ie, years) physical and cognitive symptom burdens, with often-increasing symptom burden and disability, changing social roles, loss of personhood, and prognostic uncertainty.⁵ Early discussions about prognosis, goals of care, and advance care planning are critical because they can provide guidance for treatment decisions and allow patients to retain a sense of autonomy despite progressive cognitive or functional decline.⁴

Illness Trajectories

When describing the palliative care needs of persons who have experienced stroke, it is helpful to visualize expected illness course trajectories of different neurologic conditions (Figure 2). Progressive illness trajectories are often categorized in to 4 discrete types: 1) a short, steep degree of decline (eg, aggressive cancers or ALS); 2) a long, gradual slow decline (eg, Parkinson disease or dementia); 3) a chronic decline with exacerbations (eg, multiple sclerosis); and 4) an initial acute decline, followed either by continued decline and death or a more prolonged course that may have gradual improvement, often with significant symptom burden (eg, stroke or traumatic brain injury).

Although treatment options for stroke have expanded considerably over the last decade, death and severe disability remain common outcomes after stroke.⁷ In their textbook Neuropalliative Care, Cruetzfedlt, Kluger, and Holloway eloquently describe an approach to 3 unique phases of palliative care for stroke patients—acute, sub- or postacute, and chronic. Because of the unique nature of stroke management and potential recovery outcomes, goals-of-care conversations are often carried out over time in different clinical scenarios and stages of recovery.⁵

Acute Phase of Stroke

Initial conversations with individuals who have had a stroke often pertain exclusively to whether to proceed with time-sensitive and potentially curative treatments (eg, chemical and/or mechanical thrombolysis). In this setting, an individual or their surrogate is given brief descriptions of these treatments, what potential adverse events could occur, and some idea of potential outcomes based on accumulated data. Some patients or their surrogates may have existing limits of what would be tolerable for them—their line in the sand—that help inform what type of care to proceed with. These limits may include an expressed desire for no aggressive medical care or treatments, however in many instances, these limits allow for treatment felt to offer the best chance for cure or recovery. The acute care setting can be rushed and chaotic, which can greatly affect the ability to have effective communication. For example, in a study assessing patient and family perspectives of stroke survivors, participants expressed feelings of information overload and stress-induced confusion in the decision-making process when discussing acute therapies.⁸

Postacute Phase of Stroke

In the hours to days after initial interventions for stroke, there is a subacute phase that is rife with prognostic uncertainty. During this period, very significant preference-sensitive care decisions may have to be made, such as code status, potential emergent surgeries, and whether to proceed with tracheostomy and long-term artificial nutrition via feeding tube.⁷ These decision points can also be viewed as serious illness conversation ‘triggers’ to either initiate or continue ongoing goals-of-care conversations.

Prognostic Uncertainty. As it relates to outcomes of stroke, prognostic uncertainty can be distressing for clinicians, patients, and families. Although there are a number of clinical scales and predictors to help with prognosis after stroke, prognostic uncertainty is the rule rather than the exception.⁹ As a result, stroke clinicians need to communicate honestly and effectively to provide anticipatory guidance regarding the range of possible functional outcome scenarios and issues that may arise during the different phases of recovery.¹⁰ Clinicians may want to encourage hope and demonstrate that all is being done to help with recovery, but it is also important not to build false expectations about the degree of recovery that might be expected. It is important to have insight into any personal biases in this area, because negative outcomes have been described as a result of receiving an overly optimistic or pessimistic prognosis.⁵ At the same time, our clinical assessment and perspective should not be undervalued. In some acute neurologic disease processes (eg, intracerebral hemorrhage) attending physicians’ predicted outcomes correlated more closely with patients’ 3-month outcomes compared with what was predicted by recognized scales.¹¹ A strategy described by Creutzfeldt et al that can be helpful for patients and their families in navigating this uncertainty is to present best-case, worst-case, and most-likely scenarios.⁵ Having potential outcomes described in this manner, particularly within the perspective of an individual patient’s values or what brings them meaning in life, can help navigate medical decision-making in these difficult situations.

Surrogate Decision Making. After an acute stroke, individuals often lack the capacity to make their own medical decisions, which then fall to their surrogates. For many surrogates there can be associated stress, guilt over the decisions they made, and doubt regarding whether they made the right decision. These negative effects of decision making, however, are reduced when surrogates know which treatment options were consistent with the patient’s preferences.¹² In the setting of severe stroke, discussions with surrogate decision makers about prognosis, treatment decisions, and goals of care again are best viewed as a series of conversations, beginning at admission with acute treatment decisions, and occurring at regular intervals throughout the hospitalization.⁵ Once a patient’s values and known goals have been clarified through serious illness conversations, it can sometimes be helpful to frame decisions for care in a patient’s own voice. For instance, in the case of Mr Johnson, it may be helpful to ask: “If Fred were able to join our conversation right now, what do you think he would tell us he would want in this situation?” or “What would Fred say would be an acceptable level of ‘better’?”⁵

Time-limited Trials. Another strategy that is often helpful for individuals and families, especially in critical care situations with the option to shift to comfort measures only or continue with aggressive treatments, are time-limited trials. In a time-limited trial, clinicians and surrogates agree to use certain medical therapies, such as a feeding tube or tracheostomy for a defined period of time to assess whether improvement to what would be an acceptable level of function and quality of life to the patient is likely.^5,13 This allows a patient or their surrogate time to assess for improvement; however, it can also make it more difficult to transition to comfort measures if there is no acute event to prompt that transition. In these settings, outpatient follow-up with neurologists, primary care providers, and palliative medicine specialists can be critical to help frame and guide decision-making in the longer term.⁵

Chronic Phase of Stroke

During the chronic phase of stroke recovery, much of a neurologist’s primary palliative approach may focus on symptom control and having recurrent goals-of-care conversations as health and circumstances may change for individuals and their surrogates and care partners. Survivors of stroke can have a substantial chronic symptom burden, with a high prevalence of fatigue, major depressive disorders, generalized anxiety, and chronic pain. Even those with good recovery, can suffer from depression, cognitive changes, and difficulty reintegrating into their prestroke life.⁵ Burdens of care poststroke may increasingly fall to care partners, particularly if the symptom burden continues increasing. Assessing for care partner burnout and using any resources available to help care partners is critical.¹⁴

Hospice and End-of-Life Care

When changes in function or health affect the likelihood of achieving care goals when time-limited trials have not been successful, it is appropriate to discuss hospice. Typically, this has been done when life expectancy is months rather than years but may occur earlier.⁶ It is important to recognize the stigma associated with hospice.¹⁵ Individuals and families often assume hospice is for the last few days of life, bringing their focus to dying with dignity rather than continuing to live within their goals of care. Although dignity in death is an important aspect of hospice, it exists within a much broader framework of care. It is also important to note that there are specific criteria for hospice care eligibility that need to be considered, including a life expectancy of less than 6 months, although hospice care can last longer than 6 months.¹⁶

Conversations about hospice traditionally focus on comfort care, and hospice is described as a philosophy of care that can be delivered in the home, a nursing facility, or a hospice care facility. Care plans are developed based on a patient’s needs and the availability of services. Hospice is an interdisciplinary team, and if a patient enters hospice, their neurologist can choose to take a more or less involved role.⁶

To address need for hospice care with a lower likelihood of encountering stigma, we can begin hospice-related discussions by reviewing goals of care and the services most likely to achieve those goals. These services usually include medical, nursing, emotional, spiritual, and social care from doctors, nurses, health aides, social workers, clergy or spiritual advisors, and more in a team-based manner. After reviewing goals and needs of an individual, this system of care can be defined as hospice, which is then reinforced as a way to support an individual and their family in attaining what matters most to them in the time a person has left.

Neuropalliative Care Within Neurologic Care

Incorporating palliative care into neurology is not necessarily new in that it reflects best-practice “bedside-manner” and person-centered care. As a field of study, however, neuropalliative care is a relatively new, rapidly growing, and exciting development in neurology,¹⁷ and for those that are interested, a comprehensive fellowship in this area can be completed. Palliative care specialists will remain important for team-based care when cases become complex, and as neurologists, we can also provide simple front-line primary palliative care for many of our patients.⁶ Incorporating goals-of-care conversations into day-to-day practice helps us better meet the care needs of our patients and helps lay the groundwork if dedicated palliative care teams do need to become involved. For other patients, higher levels of palliative care may not be needed or accessible, so primary palliative care from neurologists is even more essential. Thus, there is an elemental skill set of communication, a willingness to have goals-of-care conversations, and openness to hearing patients’ needs and values that can help us be our best in practice, and to more meaningfully connect with and provide support to patients and families.