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Ethical issues in geriatric dermatology
Clinics in Dermatology (2012) 30, 511–515
Ethical issues in geriatric dermatology Demian Fontanella, JD, CMA a , Jane M. Grant-Kels, MD a,⁎, Trupal Patel, BS b , Robert Norman, DO, MPH, MBA b a
Department of Dermatology, University of Connecticut Health Center, 21 South Road, Farmington, CT 06030-6231, USA Nova Southeastern University, 3301 College Avenue, Fort Lauderdale, FL 33314, USA
b
Abstract Physicians should be cognizant of the multitude of unique issues that their geriatric patients present and aware of the overall elder patient's general health status both physically and cognitively, potential drug interactions, and their short-term as well as long-term goals. While respecting patients' autonomy, we must evaluate their ability to make their own decisions regarding their health care. This will require time and patience on our part. We also must overcome our own potential prejudices about what we view as important for the older patient. Finally, we may need to appropriate involve family members or caregivers in the decision-making processes and care of our elderly patients. To properly and ethically care for this distinct and vulnerable population, with their myriad of complex issues, it is important that dermatologists understand their unique issues and challenges. © 2012 Elsevier Inc. All rights reserved.
Introduction The relationship between patient and physician has evolved over time from a largely paternalistic model to a more collaborative relationship. Legal and ethical principles of beneficence, informed consent, patient autonomy, patient access to information, and legal precedent all now shape the patient-physician relationship; however, for obvious reasons, the application of this evolution in the patient-physician partnership is less clear and less consistent for the geriatric patient population. Physicians must be cognizant of their elderly patients' rights of autonomy, informed consent, and privacy, while remaining vigilant for changes in their patients' level of competence. Appropriate treatment for all patients requires that they understand their diagnosis and the associated risks and options in an environment that is respectful of their autonomy. A realistic assessment of a geriatric patient's ability to process this information can be more difficult for physicians to assess. What role, if any, should the patient's family play in this process? Should ⁎ Corresponding author. Tel.: +1 860 679 3474; fax: +1 860 679 1267. E-mail address: [email protected] (J.M. Grant-Kels). 0738-081X/$ – see front matter © 2012 Elsevier Inc. All rights reserved. doi:10.1016/j.clindermatol.2011.06.021
social services play a role? Is the physician obligated to consult with them to adequately assess a patient's capacity? To proper and ethical manner care for this distinct and vulnerable population, with their myriad of complex issues, it is important that dermatologists understand the unique issues and challenges that the elderly face.
Beneficence versus autonomy Case 1 Mary Northern, 72 years old, lived alone in a small home near Nashville, Tennessee and required emergency medical intervention for serious infections of her feet resulting from frostbite and subsequent thermal burns. Her injuries, and the consequent infection, resulted in potentially fatal gangrene in both feet. Two treating physicians agreed that amputation was her only curative option, but Mrs Northern refused such treatment, steadfastly maintaining that her feet were not gangrenous and she would improve on her own. Tennessee Adult Protective Services requested that the court appoint a guardian, alleging that she was incompetent to make this
512 determination. Upon examination, her guardian ad litem contended that she suffered from no mental deficiency, felt she would recover, and that her decision not to have the amputation should be respected. An independent physician testified that Mrs Northern could not understand the severity of her condition and inaccurately believed that she would remain stable. The court held that although she was generally competent, as related to her immediate medical condition, she was “unable to recognize a condition that [would] probably result in her death if untreated”, and ordered the amputation.1 This case is demonstrative of the fine line that physicians must navigate while caring for their patients. Physicians can generally be confident that their assessment of each patient and the patient's capacity to participate in his or her treatment is appropriate; however, unique issues arise when treating the elderly patient. Elders make decisions with a completely different set of expectations and understanding of benefit and outcomes than do most other patients. In dermatology, prognoses may span years or even decades and the elder patient's decision making will often take end-of-life realities into consideration while pondering treatment options. For example, during an initial consultation with an 82-year-old patient recently diagnosed with a basal cell carcinoma on his left ala, the patient mentioned that he had just leased a new car. When asked why he did not purchase the vehicle, given the cost savings, he responded that he did not expect to be capable of driving once the lease was up, should he live that long, and that the lease was the more appropriate and costeffective option for him. This perspective reflects the specialized needs and concerns of the elderly. In the reality of today's health care environment, with increasing overhead and diminishing reimbursement, it becomes much easier for physicians to fail to grasp and respect the distinctive decision-making processes of elderly patients. Until recently, existing social perceptions of the elderly tended to be based on the “declineand-failure” model, which presupposed aging as a long period of continuing decline leading to death. 2(p469) Subsequent research has identified deficiencies in this model, primarily within data collection and analysis methodology. Current studies indicate that “age-related change in cognitive abilities is a very slow process, with only minimal declines of insignificant functional consequence.”2(p467) More relevantly, the signs of cognitive decline are not strictly associated with a person's age; significant variations in the rate and degree of decline between individuals are likely.2 Despite the failure to isolate a substantive link between an individual's cognitive ability and age, 12 states cite age as an independent factor for a finding of incapacity. An additional ten states include a person's age as a consideration for the imposition of guardianship.2(p477) This is indicative of a generalized social misperception of an elderly person's capacity that likely extends into the patient-physician relationship.
D. Fontanella et al. Elements of ageism and the decline-and-failure model support the premise that any behavior by an individual of advanced age that results in harm or fails to promote generally accepted standards of social behavior must be indicative of incapacity. In many instances, this is, in fact, the case, as illustrated by Mrs Northern's refusal of lifesaving treatment; however, there is an important distinction between preventing harm through ignorance or lack of capacity and preventing an individual's free expression of beliefs. On occasion, “personal habits that others perceive as self neglect may be entirely consistent with the pursuit of values important to that person.”3(p39) For example, Ghandi's fasts as a form of protest would likely satisfy the statutory criteria for self-neglect in most states, but these were accepted as an expression of his personal beliefs, albeit a potentially harmful one. This ideal is intertwined with the principle of individual autonomy. The Patient Self-Determination Act of 1991 codified the individual's right to refuse medical treatment.3(p48) This ideal was also affirmed by the US Supreme Court, which stated that a “competent person has a liberty interest under the Due Process Clause in refusing unwanted medical treatment.”4 Competent individuals have a right to engage in behavior that might adversely impact their health or even result in a more rapid death. Advanced directives are an example of the exercise of this right. Even if treatment options exist, the presence of a valid advanced directive represents the individual's constitutional right to control his or her physical destiny. The issue that professionals face, especially in the geriatric medical context, is how to ethically determine what represents merely adverse personal choice and what is neglect founded in incapacity?
Paternalism and best interests Given the individual's right to control his or her own person, such a distinction is difficult, even for trained providers. Guidelines, however, do exist and should be applied in the clinic. The elements required for informed consent clearly and distinctly isolate the issues in making a capacity determination. The person must (1) have the ability to understand the problem, the available options and the likely outcome of each option, including inaction; (2) possess the ability to express personal values related to the details of the problem; and (3) be able to communicate his or her decision based on full awareness of the elements of the problem at hand. 3(p50) Despite this firm basis for evaluating capacity, a clear test for most physicians to assess the suitability of their instructions is lacking.5 Instead, the rules promote “guidance from an appropriate diagnostician” and an explicit recognition of the need for an interdisciplinary approach to elder care demonstrates its complexity5(cmt.6); nonetheless, this determination hinges on 2 crucial but basic premises: “decisional capacity is related to the ability to
Geriatric ethics relate actions to consequences”3(p49) and the burden of proof must lie with those who seek to supersede the individual's choice.3(p51) There must always be a presumption of capacity. In many cases, a determination of capacity may appear to be relatively apparent; however, absent that clarity, the litmus test of the sanctity of autonomy versus the best interests comes into play. The best interest analysis involves a large degree of paternalism by the deciding agent. Mrs Northern's actions, or lack thereof, likely would have ultimately resulted in her death, something she clearly indicated she did not want. The state, having proved relevant decisional incapacity, determined that the surgery and her survival were in her best interests. The system protected Mrs Northern, although she may not have agreed that the outcome, amputation, long-term care, and psychotherapy, was in her best interests.3(p46) Ultimately, this inherent conflict between the elder's choice and what is best for him or her creates a tension that families, health care providers, and society strive to balance. The choice between autonomy and well-being, between freedom and best interest, is nettled with dilemma, because it requires not simply choosing right from wrong, but choosing right from right, choosing one value over another.6 In many instances, finding this balance can be difficult for physicians to achieve, because they must rely on their assessment, the patient, and the patient's caregivers to adequately appraise the patient's ability to comprehend often complex and confusing information. Active family involvement in this process can be invaluable, as the patient may trust the family's perspective and judgment; however, the benefits of this interpersonal relationship can also jeopardize the physician's ability to effectively advocate for the patient if the caregivers, either consciously or subconsciously, substitute their opinion for the patient's. The calculation of what represents the best interests of the individual is highly complex and influenced by countless factors. Ageism, personal bias, financial or emotional gain, professional condescension, and many other issues may come into play during the course of any attempt to resolve what is best for the elder. Physicians may feel that any contradictory course of actions directly questions their authority; family members may stand to gain financially or, if the elder lived with them, the departure of the elder from the home might produce significant emotional and personal benefits. In fact, studies have demonstrated that when family members act as proxy decision makers for their elderly relatives, the decisions “represent what they would choose for themselves but not what the older person would choose nor what they thought the older person would choose,” substituting their judgment for that of the elder's.7(p167) Physicians also may make decisions founded more on their paternalistic determination of the right approach than on what the patient would choose. This potentially injurious form of paternalism may be multifaceted, with even the
513 capable elderly being influenced through omission. Family members and health care providers may withhold information about treatments or options that they believe are incompatible with the elder's interests, in effect substituting their judgment concerning what represents appropriate treatment for the elder's. “Caregiver beneficence has to include protecting a fragile patient's autonomy and working to evoke what this patient really wants by medical caregivers —not what these caregivers expect or want the patient to want from them, or what involved family members may want and express emphatically to caregivers.”8
Loss of liberty No matter how well intentioned, these actions have the potential to strip elders of their basic liberties. Hand in hand with the concept of paternalism lies the doctrine of parens patriae, which essentially infuses society with the benevolent authority and responsibility to intervene on behalf of those who cannot protect themselves. Medical ethics and the basic constitutional protections that Americans enjoy support this premise. Unfortunately, the deficiency in these safeguards and the progress yet to be made creates an environment where the potential for incomplete or inadequate treatment of elders becomes more likely. As technological and scientific advances have begun to pierce the veil of mystery over the basic machinations of the human body, the focus of medicine has shifted from a holistic approach to one rooted in understanding functional abnormalities and pathophysiology. “The old belief that one should treat the disease and not the symptoms gave way to the understanding that in many conditions the symptoms are the disease.”9 Advances in our understanding of disease may result in an increase in the prevalence of “measuring benefit by the good done to only a part of the patient” as opposed to assessing and treating the patient in toto.9 “The good of patients that was identified with making them better has changed as a structural understanding of disease has been superseded to a large extent by a pathophysiological perspective that focuses on the function of parts.” 9 Given this trend toward microdiagnostics, it becomes much more likely that physicians will fail to recognize and apply holistic diagnostic methodologies appropriate for the elderly population. The difficulty in identifying incapacity has implications beyond those strategies previously discussed; there is also a real risk of either false identification or overcorrection. This potential becomes even more significant as we consider the reality that the percentage of our population that falls within these statutory boundaries is increasing faster than any other demographic. As the composition of the American population changes, a much greater chance of this develops. In combination with decreasing fertility, the life expectancy gains have led to a rapid aging of the American population, as reflected by an increasing proportion of persons aged 65 and older.10 By 2030, thanks to these advances, the
514 percentage of the population aged 65 and older is expected to reach 21.8%.11 More relevant is the prospect that the oldest of the old, those aged 85 and older, is projected to be the fastest growth segment of the population over the next century.12 Between 1960 and 1994, this population increased 274%, compared with only a 100% increase in those aged 65 and older.12 This dramatic and unprecedented increase in the number of vulnerable elders highlights the need and importance for efficient and adequate treatment protocols.
Implications for dermatology Case 2 An 87-year-old woman was diagnosed with three basal cell carcinomas one each on her forehead, left cheek, and right nostril. She was in relatively good health but had a history of diabetes, hypertension, coronary artery disease, and recurrent bladder cancer that had been treated with multiple transurethral resections. Taking this history into account, the dermatologist recommended that the three lesions be treated with desiccation and curettage instead of a more costly option, assuming that the patient would not live long enough for the lesions to recur and that the elderly patient would be unconcerned about the cosmetic results. The lesions healed uneventfully but the patient was very distressed by the large red scars she described as “mutilating.” Within three years, at the age of 90, the patient developed recurrent infiltrating basal cell carcinomas in two of the three locations and was referred for Mohs surgery. Given the inherent complexities associated with the geriatric population, dermatologists, more than most other specialties, have a greater potential to unjustly usurp their elderly patients' autonomy. Dermatological patients tend to have continuing relationships with their providers, often spanning several decades. This can result in substantial benefits for both the physician and his or her patients, because he or she may come to understand the patient's personal and medical preferences in a far more comprehensive manner than many other providers whose relationships with their patients tends to be of much shorter and/or intermittent duration. It is this very familiarity with their patients that can jeopardize their patient's autonomy, because physicians may feel that they are more invested in the patient's “best interests,” and risk substituting their own judgment when educating the patients. Geriatric patients may respond to treatments differently from younger adults. 13 In addition, systemic disease processes are far more ubiquitous in the elderly and can include diabetes mellitus, hyper/hypotension, nutritional imbalance, anemia, hypothyroidism, and autoimmunity. These underlying diseases will often manifest cutaneously, with contact dermatitis, xerosis, stasis dermatitis, psoriasis, pressure ulcers, infections (bacterial, fungal, and viral), and
D. Fontanella et al. pruritis among the more common representations. Arthritis and decreased mobility can also create treatment issues that should be dealt with appropriately, as these conditions may augment the cutaneous maladies and inhibit the ability to apply topical treatments. The growth of the geriatric population in the United States has played a role in the demands upon the relative shortage of dermatologists. Each year more than 3.5 million new skin cancers are diagnosed,14 and each year there are more cases of skin cancer diagnosed than breast, colon, lung, and prostate cancer combined.15 Among the elderly, the prevalence of these malignancies is markedly more pronounced, with 53% of deaths resulting from skin cancers occurring in those older than 65.16 Even those malignancies that are treatable tend to be more advanced in the elderly. In the United Kingdom, 20% of malignancies diagnosed in patients older than 65 were considered late stage, compared with 7% in younger populations.17 Already, advances in our understanding of the etiology of many disease processes have progressed to the point that previously complex diagnoses are now routine and easily resolved; however, early detection and treatment remain the single most effective means of managing these processes, especially malignancies. In case 2, the dermatologist's decision to desiccate and curette the basal cell carcinomas on the face of an older woman was flawed, because he assumed she would not care about the cosmetic results, reflecting his own bias about how an elderly person thinks about their self-image. In addition, he chose a therapy that was not as definitive as Mohs, assuming incorrectly that the patient would not live long enough for the lesions to recur. The effect of this approach resulted in increased costs to the health care system, as well as additional and preventable treatments and discomfort for the patient. As medical technology continues to produce innovative curative options, treatment modalities may become much less physically and psychologically traumatic for patients, especially the geriatric population, permitting successful resolution of many tumors in their early stages and without permanent functional or cosmetic deformity. For example, imiquimod cream has shown promise in the successful clearance of extensive sun damage, actinic keratosis, superficial basal cell carcinomas (sBCC), Bowen's disease, and lentigo maligna (LM). One study of the efficacy of 5% imiquimod cream in the treatment of sBCC resulted in a 79% clinical clearance 24 months following a 6-week trial.18 Another examined its effectiveness treating LM, and generated complete clearance in the subjects up to 18 months following the trial.19 Finally, a study examining the benefits of a combination therapeutic modality using immunocryosurgery for the treatment of nonsuperficial BCCs successfully treated 95% of the study patients up to 36 months after the trial.20 Despite the apparent success of these new treatment modalities, the long-term efficacy of each remains unknown. In addition, many elderly patients often are on a fixed income, raising the question of whether the patient can afford or is willing spend the money for new nongeneric treatments.
Geriatric ethics
Conclusions Physicians should be cognizant of the multitude of unique issues that their geriatric patients present. Dermatologists should also be aware of the overall elder patient's general health status both physically and cognitively, potential drug interactions, and short-term as well as long-term goals. While respecting patients' autonomy, we must evaluate their ability to make their own decisions regarding their health care. This will require time and patience on our part, despite our usual hectic and busy clinic schedules. We also must overcome our own potential prejudices about what we view as important for the older patient. Even though a seborrheic keratosis on the patient's face is benign, if the patient finds the lesion unattractive, we need to address his or her concern and even offer to eradicate that lesion to enhance the patient's appearance and sense of wellbeing and attractiveness. When treating skin conditions, we need to be aware of an older person's potential limitations in the application of topical salves because of arthritis or other musculoskeletal challenges. Finally, we may need to involve appropriate family members or caregivers in the decisionmaking processes and care of our elderly patients.
References 1. State of Tennessee Department of Human Services v Mary C. Northern, 575 SW2d 946 (Supreme Court of Tennessee 1978). 2. Whitton LS. Ageism: paternalism and prejudice. 46 DePaul L. Rev. 453 (1996-1997). 3. Simmons P, O'Brien J. Ethics and aging: confronting abuse and self-neglect. J Elder Abuse Negl 1999;11:33-54. 4. Cruzan v Director, 497 U.S. 261, 1990. 5. Model Rules of Professional Conduct, R. 1.14 (2002).
515 6. Callopy B. Ethical dimensions of autonomy in long term care. Generations 1990;14(Suppl 1990):9-12. 7. Tuckett A. On paternalism, autonomy and best interests: telling the (competent) aged-care resident what they want to know. Int J Nurs Pract 2006;12:166-73. 8. Bresnahan JF. Ethical Issues in Geriatric Medical Care. Last Updated: June 9, 1999. Available at: http://www.galter.northwestern.edu/ geriatrics/chapters/ethical_issues.cfm. Accessed March 18, 2011. 9. Sung K. Respect for the elderly: implications for human service providers. Lanham, MD: University Press of America, Inc.; 2009. p. 69. 10. Shrestha LB. Life expectancy in the United States. 2005. CRS Report RL32792. Washington, D.C.: US Congressional Research Service. 11. Moskowitz S. Saving granny from the wolf: elder abuse and neglect— the legal framework. Conn L Rev 1998;31:77, 86. 12. Hobbs FB. The Elderly Population. US Census Bureau. Available at: www.census.gov/population/www/pop-profile/elderpop.html. Accessed March 17, 2011. 13. Marks R. Treatment of skin disorders in the elderly. Skin disease in old age. 2nd ed. London: Taylor & Francis; 1999. p. 265–71. 14. Rogers HW, Weinstock MA, Harris AR, et al. Incidence estimate of nonmelanoma skin cancer in the United States. Arch Dermatol 2010;146:283-7. 15. American Cancer Society. Cancer Facts and Figures 2010. Available at: http://www.cancer.org/research/cancerfactsfigures/cancerfactsfigures/ cancer-facts-and-figures-2010. 2011 Accessed January 24. 16. Syrigos K, Tzannou I, Katirtzoglou N, Georgiou E. Skin cancer in the elderly. In Vivo 2005;19:643-52. 17. Smith R. Elderly ‘ignoring' Skin Cancer Signs. Telegraph, 30 Nov. 2010. Available at: http://www.telegraph.co.uk/health/ healthnews/8167776/Elderly-ignoring-skin-cancer-signs.html. Accessed March 21, 2011. 18. Clinical Studies. Actinic Keratosis. Available at: http://dailymed.nlm. nih.gov/dailymed/archives/fdaDrugInfo.cfm?archiveid=41005# section-13. Accessed March 22, 2011. 19. Wolf IH, Cerroni L, Kodama K, Kerl H. Treatment of lentigo maligna (melanoma in situ) with the immune response modifier imiquimod. Arch Dermatol 2005;141:510-54. 20. Gaitanis G, Nomikos K, Vava E, Alexopoulos EC, Bassukas ID. Immunocryosurgery for basal cell carcinoma: results of a pilot, prospective, open-label study of cryosurgery during continued imiquimod application. J Eur Acad Dermatol Venereol 2009;23:1427-31.
Ethical issues in geriatric dermatology Demian Fontanella, JD, CMA a , Jane M. Grant-Kels, MD a,⁎, Trupal Patel, BS b , Robert Norman, DO, MPH, MBA b a
Department of Dermatology, University of Connecticut Health Center, 21 South Road, Farmington, CT 06030-6231, USA Nova Southeastern University, 3301 College Avenue, Fort Lauderdale, FL 33314, USA
b
Abstract Physicians should be cognizant of the multitude of unique issues that their geriatric patients present and aware of the overall elder patient's general health status both physically and cognitively, potential drug interactions, and their short-term as well as long-term goals. While respecting patients' autonomy, we must evaluate their ability to make their own decisions regarding their health care. This will require time and patience on our part. We also must overcome our own potential prejudices about what we view as important for the older patient. Finally, we may need to appropriate involve family members or caregivers in the decision-making processes and care of our elderly patients. To properly and ethically care for this distinct and vulnerable population, with their myriad of complex issues, it is important that dermatologists understand their unique issues and challenges. © 2012 Elsevier Inc. All rights reserved.
Introduction The relationship between patient and physician has evolved over time from a largely paternalistic model to a more collaborative relationship. Legal and ethical principles of beneficence, informed consent, patient autonomy, patient access to information, and legal precedent all now shape the patient-physician relationship; however, for obvious reasons, the application of this evolution in the patient-physician partnership is less clear and less consistent for the geriatric patient population. Physicians must be cognizant of their elderly patients' rights of autonomy, informed consent, and privacy, while remaining vigilant for changes in their patients' level of competence. Appropriate treatment for all patients requires that they understand their diagnosis and the associated risks and options in an environment that is respectful of their autonomy. A realistic assessment of a geriatric patient's ability to process this information can be more difficult for physicians to assess. What role, if any, should the patient's family play in this process? Should ⁎ Corresponding author. Tel.: +1 860 679 3474; fax: +1 860 679 1267. E-mail address: [email protected] (J.M. Grant-Kels). 0738-081X/$ – see front matter © 2012 Elsevier Inc. All rights reserved. doi:10.1016/j.clindermatol.2011.06.021
social services play a role? Is the physician obligated to consult with them to adequately assess a patient's capacity? To proper and ethical manner care for this distinct and vulnerable population, with their myriad of complex issues, it is important that dermatologists understand the unique issues and challenges that the elderly face.
Beneficence versus autonomy Case 1 Mary Northern, 72 years old, lived alone in a small home near Nashville, Tennessee and required emergency medical intervention for serious infections of her feet resulting from frostbite and subsequent thermal burns. Her injuries, and the consequent infection, resulted in potentially fatal gangrene in both feet. Two treating physicians agreed that amputation was her only curative option, but Mrs Northern refused such treatment, steadfastly maintaining that her feet were not gangrenous and she would improve on her own. Tennessee Adult Protective Services requested that the court appoint a guardian, alleging that she was incompetent to make this
512 determination. Upon examination, her guardian ad litem contended that she suffered from no mental deficiency, felt she would recover, and that her decision not to have the amputation should be respected. An independent physician testified that Mrs Northern could not understand the severity of her condition and inaccurately believed that she would remain stable. The court held that although she was generally competent, as related to her immediate medical condition, she was “unable to recognize a condition that [would] probably result in her death if untreated”, and ordered the amputation.1 This case is demonstrative of the fine line that physicians must navigate while caring for their patients. Physicians can generally be confident that their assessment of each patient and the patient's capacity to participate in his or her treatment is appropriate; however, unique issues arise when treating the elderly patient. Elders make decisions with a completely different set of expectations and understanding of benefit and outcomes than do most other patients. In dermatology, prognoses may span years or even decades and the elder patient's decision making will often take end-of-life realities into consideration while pondering treatment options. For example, during an initial consultation with an 82-year-old patient recently diagnosed with a basal cell carcinoma on his left ala, the patient mentioned that he had just leased a new car. When asked why he did not purchase the vehicle, given the cost savings, he responded that he did not expect to be capable of driving once the lease was up, should he live that long, and that the lease was the more appropriate and costeffective option for him. This perspective reflects the specialized needs and concerns of the elderly. In the reality of today's health care environment, with increasing overhead and diminishing reimbursement, it becomes much easier for physicians to fail to grasp and respect the distinctive decision-making processes of elderly patients. Until recently, existing social perceptions of the elderly tended to be based on the “declineand-failure” model, which presupposed aging as a long period of continuing decline leading to death. 2(p469) Subsequent research has identified deficiencies in this model, primarily within data collection and analysis methodology. Current studies indicate that “age-related change in cognitive abilities is a very slow process, with only minimal declines of insignificant functional consequence.”2(p467) More relevantly, the signs of cognitive decline are not strictly associated with a person's age; significant variations in the rate and degree of decline between individuals are likely.2 Despite the failure to isolate a substantive link between an individual's cognitive ability and age, 12 states cite age as an independent factor for a finding of incapacity. An additional ten states include a person's age as a consideration for the imposition of guardianship.2(p477) This is indicative of a generalized social misperception of an elderly person's capacity that likely extends into the patient-physician relationship.
D. Fontanella et al. Elements of ageism and the decline-and-failure model support the premise that any behavior by an individual of advanced age that results in harm or fails to promote generally accepted standards of social behavior must be indicative of incapacity. In many instances, this is, in fact, the case, as illustrated by Mrs Northern's refusal of lifesaving treatment; however, there is an important distinction between preventing harm through ignorance or lack of capacity and preventing an individual's free expression of beliefs. On occasion, “personal habits that others perceive as self neglect may be entirely consistent with the pursuit of values important to that person.”3(p39) For example, Ghandi's fasts as a form of protest would likely satisfy the statutory criteria for self-neglect in most states, but these were accepted as an expression of his personal beliefs, albeit a potentially harmful one. This ideal is intertwined with the principle of individual autonomy. The Patient Self-Determination Act of 1991 codified the individual's right to refuse medical treatment.3(p48) This ideal was also affirmed by the US Supreme Court, which stated that a “competent person has a liberty interest under the Due Process Clause in refusing unwanted medical treatment.”4 Competent individuals have a right to engage in behavior that might adversely impact their health or even result in a more rapid death. Advanced directives are an example of the exercise of this right. Even if treatment options exist, the presence of a valid advanced directive represents the individual's constitutional right to control his or her physical destiny. The issue that professionals face, especially in the geriatric medical context, is how to ethically determine what represents merely adverse personal choice and what is neglect founded in incapacity?
Paternalism and best interests Given the individual's right to control his or her own person, such a distinction is difficult, even for trained providers. Guidelines, however, do exist and should be applied in the clinic. The elements required for informed consent clearly and distinctly isolate the issues in making a capacity determination. The person must (1) have the ability to understand the problem, the available options and the likely outcome of each option, including inaction; (2) possess the ability to express personal values related to the details of the problem; and (3) be able to communicate his or her decision based on full awareness of the elements of the problem at hand. 3(p50) Despite this firm basis for evaluating capacity, a clear test for most physicians to assess the suitability of their instructions is lacking.5 Instead, the rules promote “guidance from an appropriate diagnostician” and an explicit recognition of the need for an interdisciplinary approach to elder care demonstrates its complexity5(cmt.6); nonetheless, this determination hinges on 2 crucial but basic premises: “decisional capacity is related to the ability to
Geriatric ethics relate actions to consequences”3(p49) and the burden of proof must lie with those who seek to supersede the individual's choice.3(p51) There must always be a presumption of capacity. In many cases, a determination of capacity may appear to be relatively apparent; however, absent that clarity, the litmus test of the sanctity of autonomy versus the best interests comes into play. The best interest analysis involves a large degree of paternalism by the deciding agent. Mrs Northern's actions, or lack thereof, likely would have ultimately resulted in her death, something she clearly indicated she did not want. The state, having proved relevant decisional incapacity, determined that the surgery and her survival were in her best interests. The system protected Mrs Northern, although she may not have agreed that the outcome, amputation, long-term care, and psychotherapy, was in her best interests.3(p46) Ultimately, this inherent conflict between the elder's choice and what is best for him or her creates a tension that families, health care providers, and society strive to balance. The choice between autonomy and well-being, between freedom and best interest, is nettled with dilemma, because it requires not simply choosing right from wrong, but choosing right from right, choosing one value over another.6 In many instances, finding this balance can be difficult for physicians to achieve, because they must rely on their assessment, the patient, and the patient's caregivers to adequately appraise the patient's ability to comprehend often complex and confusing information. Active family involvement in this process can be invaluable, as the patient may trust the family's perspective and judgment; however, the benefits of this interpersonal relationship can also jeopardize the physician's ability to effectively advocate for the patient if the caregivers, either consciously or subconsciously, substitute their opinion for the patient's. The calculation of what represents the best interests of the individual is highly complex and influenced by countless factors. Ageism, personal bias, financial or emotional gain, professional condescension, and many other issues may come into play during the course of any attempt to resolve what is best for the elder. Physicians may feel that any contradictory course of actions directly questions their authority; family members may stand to gain financially or, if the elder lived with them, the departure of the elder from the home might produce significant emotional and personal benefits. In fact, studies have demonstrated that when family members act as proxy decision makers for their elderly relatives, the decisions “represent what they would choose for themselves but not what the older person would choose nor what they thought the older person would choose,” substituting their judgment for that of the elder's.7(p167) Physicians also may make decisions founded more on their paternalistic determination of the right approach than on what the patient would choose. This potentially injurious form of paternalism may be multifaceted, with even the
513 capable elderly being influenced through omission. Family members and health care providers may withhold information about treatments or options that they believe are incompatible with the elder's interests, in effect substituting their judgment concerning what represents appropriate treatment for the elder's. “Caregiver beneficence has to include protecting a fragile patient's autonomy and working to evoke what this patient really wants by medical caregivers —not what these caregivers expect or want the patient to want from them, or what involved family members may want and express emphatically to caregivers.”8
Loss of liberty No matter how well intentioned, these actions have the potential to strip elders of their basic liberties. Hand in hand with the concept of paternalism lies the doctrine of parens patriae, which essentially infuses society with the benevolent authority and responsibility to intervene on behalf of those who cannot protect themselves. Medical ethics and the basic constitutional protections that Americans enjoy support this premise. Unfortunately, the deficiency in these safeguards and the progress yet to be made creates an environment where the potential for incomplete or inadequate treatment of elders becomes more likely. As technological and scientific advances have begun to pierce the veil of mystery over the basic machinations of the human body, the focus of medicine has shifted from a holistic approach to one rooted in understanding functional abnormalities and pathophysiology. “The old belief that one should treat the disease and not the symptoms gave way to the understanding that in many conditions the symptoms are the disease.”9 Advances in our understanding of disease may result in an increase in the prevalence of “measuring benefit by the good done to only a part of the patient” as opposed to assessing and treating the patient in toto.9 “The good of patients that was identified with making them better has changed as a structural understanding of disease has been superseded to a large extent by a pathophysiological perspective that focuses on the function of parts.” 9 Given this trend toward microdiagnostics, it becomes much more likely that physicians will fail to recognize and apply holistic diagnostic methodologies appropriate for the elderly population. The difficulty in identifying incapacity has implications beyond those strategies previously discussed; there is also a real risk of either false identification or overcorrection. This potential becomes even more significant as we consider the reality that the percentage of our population that falls within these statutory boundaries is increasing faster than any other demographic. As the composition of the American population changes, a much greater chance of this develops. In combination with decreasing fertility, the life expectancy gains have led to a rapid aging of the American population, as reflected by an increasing proportion of persons aged 65 and older.10 By 2030, thanks to these advances, the
514 percentage of the population aged 65 and older is expected to reach 21.8%.11 More relevant is the prospect that the oldest of the old, those aged 85 and older, is projected to be the fastest growth segment of the population over the next century.12 Between 1960 and 1994, this population increased 274%, compared with only a 100% increase in those aged 65 and older.12 This dramatic and unprecedented increase in the number of vulnerable elders highlights the need and importance for efficient and adequate treatment protocols.
Implications for dermatology Case 2 An 87-year-old woman was diagnosed with three basal cell carcinomas one each on her forehead, left cheek, and right nostril. She was in relatively good health but had a history of diabetes, hypertension, coronary artery disease, and recurrent bladder cancer that had been treated with multiple transurethral resections. Taking this history into account, the dermatologist recommended that the three lesions be treated with desiccation and curettage instead of a more costly option, assuming that the patient would not live long enough for the lesions to recur and that the elderly patient would be unconcerned about the cosmetic results. The lesions healed uneventfully but the patient was very distressed by the large red scars she described as “mutilating.” Within three years, at the age of 90, the patient developed recurrent infiltrating basal cell carcinomas in two of the three locations and was referred for Mohs surgery. Given the inherent complexities associated with the geriatric population, dermatologists, more than most other specialties, have a greater potential to unjustly usurp their elderly patients' autonomy. Dermatological patients tend to have continuing relationships with their providers, often spanning several decades. This can result in substantial benefits for both the physician and his or her patients, because he or she may come to understand the patient's personal and medical preferences in a far more comprehensive manner than many other providers whose relationships with their patients tends to be of much shorter and/or intermittent duration. It is this very familiarity with their patients that can jeopardize their patient's autonomy, because physicians may feel that they are more invested in the patient's “best interests,” and risk substituting their own judgment when educating the patients. Geriatric patients may respond to treatments differently from younger adults. 13 In addition, systemic disease processes are far more ubiquitous in the elderly and can include diabetes mellitus, hyper/hypotension, nutritional imbalance, anemia, hypothyroidism, and autoimmunity. These underlying diseases will often manifest cutaneously, with contact dermatitis, xerosis, stasis dermatitis, psoriasis, pressure ulcers, infections (bacterial, fungal, and viral), and
D. Fontanella et al. pruritis among the more common representations. Arthritis and decreased mobility can also create treatment issues that should be dealt with appropriately, as these conditions may augment the cutaneous maladies and inhibit the ability to apply topical treatments. The growth of the geriatric population in the United States has played a role in the demands upon the relative shortage of dermatologists. Each year more than 3.5 million new skin cancers are diagnosed,14 and each year there are more cases of skin cancer diagnosed than breast, colon, lung, and prostate cancer combined.15 Among the elderly, the prevalence of these malignancies is markedly more pronounced, with 53% of deaths resulting from skin cancers occurring in those older than 65.16 Even those malignancies that are treatable tend to be more advanced in the elderly. In the United Kingdom, 20% of malignancies diagnosed in patients older than 65 were considered late stage, compared with 7% in younger populations.17 Already, advances in our understanding of the etiology of many disease processes have progressed to the point that previously complex diagnoses are now routine and easily resolved; however, early detection and treatment remain the single most effective means of managing these processes, especially malignancies. In case 2, the dermatologist's decision to desiccate and curette the basal cell carcinomas on the face of an older woman was flawed, because he assumed she would not care about the cosmetic results, reflecting his own bias about how an elderly person thinks about their self-image. In addition, he chose a therapy that was not as definitive as Mohs, assuming incorrectly that the patient would not live long enough for the lesions to recur. The effect of this approach resulted in increased costs to the health care system, as well as additional and preventable treatments and discomfort for the patient. As medical technology continues to produce innovative curative options, treatment modalities may become much less physically and psychologically traumatic for patients, especially the geriatric population, permitting successful resolution of many tumors in their early stages and without permanent functional or cosmetic deformity. For example, imiquimod cream has shown promise in the successful clearance of extensive sun damage, actinic keratosis, superficial basal cell carcinomas (sBCC), Bowen's disease, and lentigo maligna (LM). One study of the efficacy of 5% imiquimod cream in the treatment of sBCC resulted in a 79% clinical clearance 24 months following a 6-week trial.18 Another examined its effectiveness treating LM, and generated complete clearance in the subjects up to 18 months following the trial.19 Finally, a study examining the benefits of a combination therapeutic modality using immunocryosurgery for the treatment of nonsuperficial BCCs successfully treated 95% of the study patients up to 36 months after the trial.20 Despite the apparent success of these new treatment modalities, the long-term efficacy of each remains unknown. In addition, many elderly patients often are on a fixed income, raising the question of whether the patient can afford or is willing spend the money for new nongeneric treatments.
Geriatric ethics
Conclusions Physicians should be cognizant of the multitude of unique issues that their geriatric patients present. Dermatologists should also be aware of the overall elder patient's general health status both physically and cognitively, potential drug interactions, and short-term as well as long-term goals. While respecting patients' autonomy, we must evaluate their ability to make their own decisions regarding their health care. This will require time and patience on our part, despite our usual hectic and busy clinic schedules. We also must overcome our own potential prejudices about what we view as important for the older patient. Even though a seborrheic keratosis on the patient's face is benign, if the patient finds the lesion unattractive, we need to address his or her concern and even offer to eradicate that lesion to enhance the patient's appearance and sense of wellbeing and attractiveness. When treating skin conditions, we need to be aware of an older person's potential limitations in the application of topical salves because of arthritis or other musculoskeletal challenges. Finally, we may need to involve appropriate family members or caregivers in the decisionmaking processes and care of our elderly patients.
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