Palliative care and geriatrics are both designed to serve the needs of the most vulnerable patients with a “common central philosophy of patient-centered commitment to holistic and humane care.” Due to the growing geriatric population, there is an unprecedented need to provide excellent palliative care to older adults, especially those with dementia, frailty, and multimorbidity. Partnerships between geriatricians and palliative medicine specialists can be especially useful for management of patients with these conditions, with each specialty working together to ensure the highest level of evidenced-based compassionate care to older adults.
Older adults with dementia have significant symptom burden as their disease progresses and as such benefit from combined geriatric and palliative medicine approaches. Patients in the earlier stages of dementia can benefit from advanced care planning to anticipate future loss in decision-making capacity are lost to alleviate suffering of family and surrogates. As dementia progresses patients are often faced with increasing symptom burden including worsening behavioral and psychological symptoms of dementia. Pain may affect up to 46% of patients with dementia. As patients approach the end of life, the proportion with pain, dyspnea, pressure ulcers, and aspiration increases. Those with advanced disease can benefit from appropriate management of weight loss and swallowing difficulties. Those with end-stage disease can benefit from hospice services.
Health care professionals caring for older adults with earlier stages of dementia should engage patients and their families in advance care planning. Advance care planning discussions with patients in the earlier stages of dementia may result in completion of an advance directive document in which the patient can specify preferences for future care (such as a living will) and/or designate an authorized surrogate decision maker to communicate the patient’s preferences in circumstances when they no longer possess medical decision-making capacity (see more details in Chapter 66). For patients with dementia and limited life expectancy, advance care planning discussions may also result in completion of a State Authorized Portable Order for Life-Sustaining Treatments such as the Physician Orders for Life-Sustaining Treatment (POLST) form. In later stages of dementia when a patient lacks decision-making capacity, the patient’s surrogate may complete a POLST form according to the patient’s wishes. Geriatricians and palliative medicine specialists are both well equipped to conduct these vital discussions. The Gerontological Society of America has resources available to assist clinicians with communication with patients with cognitive and sensory impairments, and palliative care resources are available for communication with patients and families about delivering bad news, discussing prognosis and goals of care. Combining this expertise can lead to exceptional patient-centered care.
In advanced stages of dementia, patients may develop decreased appetite or dysphagia putting them at risk for weight loss and aspiration pneumonia, respectively. An example of the powerful collaborative effort between geriatrics and palliative medicine is evidenced in the American Board of Internal Medicine (ABIM) “Choosing Wisely” initiative. The first recommendation from the American Geriatrics Society (AGS), the American Academy of Hospice and Palliative Medicine (AAHPM), and the Society for Post-Acute and Long-Term Care Medicine (AMDA) is regarding patients with advance dementia and eating difficulties. AGS, AAHPM, and AMDA all recommend in favor of offering oral assisted feeding and recommend against percutaneous feeding tubes in advanced dementia. Studies have shown that feeding tubes in advanced dementia do not prevent aspiration pneumonia, improve healing of pressure ulcers, or lead to increased survival. In fact, feeding tube usage has been associated with the development of pressure ulcers and the use of pharmacologic and physical restraints. AGS and AAHPM recommend assistance with oral feeding as an evidence-based alternative to feeding tubes for patients with advanced dementia and difficulty eating. AGS and AAHPM agree that assistance with oral feeding places an appropriate focus on comfort and human interaction in the final phase of life instead of focusing solely on nutritional goals.
It is imperative that health care professionals provide appropriate management of behavioral and psychological symptoms of dementia. As discussed in detail in the management of agitation in Chapter 74, management of behavioral and psychological symptoms of dementia should involve (1) identifying the specific problem behavior and its severity, (2) identifying potential triggers for the behavior, (3) removing underlying physiologic and environmental triggers whenever possible, (4) attempting nonpharmacologic interventions to improve behavior, and (5) as a final resort, using recommended targeted pharmacotherapy for behaviors that do not respond to attempts of nonpharmacologic management in situations that risk patient or caregiver safety. As part of the ABIM “Choosing wisely” initiative, AGS recommends against the use of antipsychotics as first-line treatment for behavioral and psychological symptoms of dementia. Notably, a cluster randomized trial of nursing home patients with behavioral problems using an empiric stepwise protocol to treat pain resulted in a decrease in the number of symptoms. Most patients were treated with the first step of the protocol, acetaminophen. Stronger pain medicines (opioids) may be tried for nonresponders.
Determining a 6-month prognosis in advanced dementia can be challenging. Factors such as irreversible weight loss, low body mass index, functional dependence, and advanced age are associated with limited prognosis in dementia patients. Palliative medicine specialists can often help geriatricians identify patients with dementia who are eligible to receive hospice care. Geriatricians can be a valuable resource for palliative medicine specialists (and others managing these challenging behaviors) with knowledge of appropriate medications for specific behavioral conditions and age-appropriate medication dosing.
While the exact definition of frailty remains a subject of debate (see Chapter 46), frail patients are particularly vulnerable to adverse outcomes and have significant palliative care needs. For instance, severely frail older adults have shown poor response to treatment and may not benefit from intensive rehabilitation efforts. Attempting rehabilitation of the most frail may in fact cause harm. The key to managing the palliative needs of frailty is determining goals and recognizing the patient with poor potential to improve. When in doubt, a therapeutic trial of improving performance status is always appropriate, but if not achieved should prompt a repeat discussion of goals and prognosis.
Determining the severity of frailty and the potential for reversibility can help clinicians recommend appropriate treatment. According to Fried, the frailty syndrome is characterized by a combination of (1) slowed walking speed, (2) weakness, (3) weight loss, (4) decreased activity levels, and (5) exhaustion, Older adults with a Fried score of 1 to 2 are considered “prefrail” and evidence of frailty may not be clinically apparent until the patient is exposed to a stressor such as an infection or hospitalization. Those with a Fried score greater than or equal to 3 are considered frail. Prefrail and frail older adults may respond to efforts to prevent or reverse frailty such as minimizing immobility and polypharmacy, treating pain and depression, maintaining muscle mass and strength through resistance exercise, and ensuring nutritional adequacy. Severe frailty, with a score of 4 to 5 and low cholesterol and albumin levels, has been associated with higher rates of mortality and poor response to treatment. These older adults may instead benefit from hospice services due to the high risk of mortality over 6 to 12 months.
Patients with frailty and multimorbidity may still be eligible for hospice even if they do not have a single terminal illness. While CMS has stated that frailty, debility, or adult failure to thrive are not accepted as the principal hospice diagnosis reported on the Medicare hospice claims form, this does not mean that frail patients are not eligible for the Medicare Hospice Benefit. A patient is considered hospice eligible if the attending physician and hospice medical director have certified the patient to be terminally ill with a prognosis of less than 6 months. This prognosis is determined based on the severity and irreversibility of the patient’s frailty as well as their multimorbidity. The hospice Medical Director could utilize the hospice LCDs available on the CMS website to support their determination that the patient has a prognosis of less than 6 months.
Providing optimal care for older adults with multiple chronic conditions, or multimorbidity, presents one of the greatest challenges in geriatrics. Patients with multimorbidity have increased use of health care resources, poorer quality of life, higher rates of institutionalization, disability, and death. To address the challenge of providing patient-centered care to older adults with multimorbidity, the AGS convened an expert panel with the goal of developing an optimal clinical approach for this population. The panel created a stepwise approach to patient care that integrates key principles of geriatric and palliative medicine into five domains: (1) patient preferences, (2) interpreting the evidence, (3) prognosis, (4) clinical feasibility, and (5) optimizing therapies and care plans. The following is a summary of the “Patient-Centered Care for Older Adults with Multiple Chronic Conditions: A Stepwise Approach: Expert Panel on the Care of Older Adults with Multimorbidity.”
Patient Preferences: The guiding principle of the patient preferences domain is “eliciting and incorporating patient preferences into medical decision making.” The expert panel emphasizes the importance of eliciting preferences and distinguishes this from simply asking patients to make a treatment decision. Eliciting preferences involves investigating a patient’s values and priorities and understanding the rationale that lead to treatment decisions. If a patient were to state that “Being independent and at home is really important to me. I know my life is short and I do not want to be bedbound or in a state where I couldn’t interact with my family. For this reason I do not want to be intubated even temporarily”; this is an example of a treatment preference, where the rationale of the decision is explained. In contrast, an example of a treatment decision statement is “I do not want to be intubated.” Patient preferences and treatment decisions should only be elicited after the patient is fully informed about the risks and benefits of the treatment options. This may be done with the use of a decision aid. It is also important for clinicians to accommodate the decision-making style of the patient. Some individuals prefer to make decisions independently, others would like the input of their family or health care provider, and some others may even prefer to completely defer decision making to family or caregivers. Some individuals prefer detailed information while others prefer general knowledge to aid in the decision-making process. Since patients may change their minds over time therefore discussions to elicit preferences are not a one-time event and should occur regularly with significant changes in health. Finally, “the principle of eliciting preferences and involving patients in the decision-making process does not mean that the patient has the right to demand any available treatment without a reasonable expectation of some benefit.”
Interpreting the Evidence: The guiding principle of this domain is “recognizing the limitations of the evidence base, interpreting and applying the medical literature specifically to older adults with multimorbidity.” The first step to interpreting the evidence involves reviewing the applicability and quality of the evidence, essentially, were older adults with multimorbidity sufficiently included to make the study findings relevant? The next step involves determining if the outcomes of the study are relevant to the patient. Many studies report intermediate outcomes such as lowering cholesterol or blood pressure levels rather than outcomes that affect patients more directly such as myocardial infarction and stroke or quality of life. Studies that report direct outcomes can be more meaningful when managing older adults with multimorbidity, especially those with limited life expectancy. Interpreting the evidence also includes evaluating the reported harms and burdens of the intervention. How does the intervention in the study affect other medical conditions that the older adult with multimorbidity has? The next step involves, determining if the study reports relative risk reduction (RRR) or absolute risk reduction (ARR). Since ARR incorporates the baseline risk in a population, studies that report ARR can be more meaningful for patient outcomes for older adults since they may have higher or lower baseline risk than the general population. For instance, a study may report a 50% RRR, but this could be due to a baseline risk of 2% without treatment minus a 1% risk with treatment. In this situation, although the relative risk reduction is 50%, the absolute risk reduction would only be 1%. The final step of interpreting the evidence involves considering the time horizon to benefit of the treatment. The length of time needed to accrue an observable, clinically meaningful risk reduction for a specific outcome is known as the time horizon to benefit. Similarly, the length of time in which meaningful adverse events occur is known as the time horizon to harm. For example, since the time horizon to benefit for tight glycemic control is many years, it is more likely to harm older adults with multimorbidity with limited prognosis as they will not live long enough to receive benefit and are put at immediate risk of hypoglycemia. Clinicians should engage patients in shared decision making to determine if the immediate risks of the treatment outweigh the potential future benefits.
Prognosis: The guiding principle of this domain is “framing clinical management decisions within the context of risks, burdens, benefits, and prognosis (eg, remaining life expectancy, functional status, quality of life) for older adults with multimorbidity.” Determining and discussing prognosis with patients and caregivers can help inform treatment decisions. Interventions can be ineffective or harmful when the time horizon to benefit is longer than the patient’s life expectancy. Further information about determining and discussing prognosis is available in the prognosis section of this chapter.
Clinical Feasibility: The guiding principle of this domain is “considering treatment complexity and feasibility when making clinical management decisions for older adults with multimorbidity.” For older adults with multimorbidity treatment regimens may not be feasible due to treatment complexity or cost. These factors should be taken into consideration when recommending interventions.
Optimizing Therapies and Care Plans: The guiding principle of this domain is “choosing therapies that optimize benefit, minimize harm, and enhance quality of life for older adults with multimorbidity.” Treatments and interventions should be prioritized to minimize risk exposure, maximize benefit, and optimize adherence to the most important pharmacologic and nonpharmacologic therapies. This involves identifying interventions (treatments, procedures, pharmacologic and nonpharmacologic therapies) that may be inappropriate for older adults and engaging patients in a discussion about not starting or stopping them.
Palliative Needs Of The Lesbian, Gay, Bisexual, And Transgender Population
Within the United States, and indeed throughout much of the world, societal acceptance of lesbian, gay, bisexual, and transgender/transsexual (LGBT) individuals is rapidly evolving. Same-sex marriage became legal in the United States on June 26, 2015, with the Supreme Court’s Obergefell v. Hodges decision. With that decision, federal recognition of benefits for married couples between two people of the same sex was officially sanctioned. However, the LGBT community has long faced health care disparities, and continued legal challenges to Obergefell v. Hodges may persist for the immediate future.
While all persons with serious illness endure difficulties, those patients who are lesbian, gay, bisexual, and transgender/transsexual may face unique issues distinct from the heterosexual population. LGBT older adults have a history of having experienced stigmatization, discrimination, victimization, or violence during their lifespan by their families, school, workplaces, and even health care providers. Health care professionals may discriminate LGBT persons in the form of derogatory comments, refusal of care, and biases. LGBT persons may present at more advanced stages of illness because they are more reluctant to seek health care or they lack health insurance. Compared to the general population that has suicide attempt rates of 1.6%, gays, lesbians, and bisexuals have rates of 10–20%, and transgender and nongender-conforming persons have the highest suicide attempt rates of 41%. The highest prevalence of lifetime suicide attempts (65%) has been found among those transgender and gender-nonconforming adults with a disability. Health care professionals should be attentive to the possibility of a suicide attempt when caring for an LGBT person who is diagnosed with a serious illness like cancer or a debilitating disabling illness like amyotrophic lateral sclerosis (ALS).
LGBT persons may need to rely on close friends rather than on family for caregiving. Nonfamily caregiving may be due to estrangement from the person’s biological family or because LGBT persons are less likely to have children. Informal communities of support are also known as “lavender families” or “families of choice” and should be respected and included as family as identified by patients. The support from the “lavender family” may become essential in caring for an LGBT individual at the end of life. It may be challenging for LGBT persons who need custodial care to find a long-term care facility that is “LGBT friendly”. LGBT patients may hide their sexual identities to be able to access a long-term care facility also known as “going back in the closet.”
Transgender patients may face several unique stressors. A person who is biologically a man but who prefers to dress and identify as a woman may be faced with having to share a hospital room with a man. Also a person who is genetically a female but who wishes to identify as male, may be faced with not being able to legally make the change because he may have conditions unique or more typical to the female gender such as endometriosis and breast cancer which would not be covered by his health insurance should he legally want to be considered as a man. Having a gender-variant body and requiring assistance for basic needs of daily living like bathing, dressing, or feeding puts the transgender individual in a vulnerable position and at risk of being physically abused.
It is of extreme importance that the LGBT person takes steps to legally document their preferences for health care and other legal matters. Individuals that may be closer to the LGBT person may not be identified as the default surrogate by law should the LGBT person no be able to make his or her own decision; and it is possible that the default decision maker may not be respectful of the individual’s chosen gender identity.
LGBT patients should designate a Health Care Power of Attorney (HCPOA) and additionally explicitly give that person the power to direct health care professionals with the preferences of name, pronoun of choice, and appearance consistent with their gender identity. Given that the HCPOA and advance directives are no longer effective as soon as the person dies it is important for LGBT persons to also put in place a Disposition of Bodily Human Remains (DBHR) document so that he or she can name who is the person to have authority over the remains of a person once deceased. For example, a same-sex partner who had HCPOA would not be able to claim the deceased body of his or her loved one unless he or she had been designated to do so in a DBHR document.
LGBT persons also may face challenges during the bereavement process, particularly if in the case of a same sex relationship, the couple had not been openly acknowledged. The surviving individual may experience “silent mourning” and not have access to traditional grief support mechanism.
Ethnic and Culturally Diverse Populations
In addition to the aging demographic changes of the US population, a key change impacting geriatric palliative care is increasing ethnic diversity. Among older adults age 65 and older, approximately 21% are members of a racial or ethnic minority (9% African Americans, 4% Asian or Pacific Islander, 7% Hispanic, 0.5% Native American, 0.1% Native Hawaiian/Pacific Islander, and 0.7% identified themselves as having two or more races) and there will be a trend to increasing diversity in older adults in the future.
Johnson reviewed racial and ethnic disparities in palliative care in 2013 and found growing evidence that racial and ethnic disparities exist in both clinical outcomes as well as in access to palliative care. Disparities in quality of care include lower satisfaction, poor communication, and worse pain management outcomes for minorities. Hospice utilization is lower for minority older adults and there are higher rates of hospice disenrollment among African Americans.
End-of-life care preferences may be significantly influenced by the expected norms of a patient’s culture of birth which may differ significantly from US health care’s expectations. However, any single patient from any ethnic group may have more or less affiliation with traditional beliefs from their culture of origin. The key is to ask. The phrase, “I am not familiar with your home country, are there any traditions or beliefs that affect your health care choices I should know about?” can begin a discussion.
Patients who are unable to speak the language of the care team are at risk of receiving care that may not match their wishes. Use of family members as interpreters risks information being withheld or incomplete translation. A trained medical interpreter at bedside or a telephone translator service is recommended.
The Institute of Medicine’s (IOM) [now known as National Academy of Medicine (NAM)] report on healthcare disparities and unequal treatment determined that patients’ attitudes toward health care and treatment preferences were not the major source of disparities. At the level of clinical encounter, factors that lead to disparities include bias or prejudice, stereotypes (beliefs held by the provider about the behavior or health of minorities) and uncertainty about preferences. The key systems factors in disparities per the NAM study were factors such as cultural and linguistic barriers, fragmentation of health care systems, and the types of incentives in place.
For clinicians seeking to learn more about ethnogeriatrics Stanford University offers an excellent online curriculum. In addition, for a point-of-care resource, The AGS publication Doorway Thoughts addresses issues and concerns providing relevant details regarding the beliefs, traditions, and customs that would apply to clinical encounters with an older adult from 15 groups of diverse ethnic backgrounds.