Questions and Answers
This page answers questions you might have about end-of-life care for someone you know with significant intellectual disabilities.
An important note: For the purposes of this website, the ethical decision-making under discussion is for people whose cognitive functioning is so limited that they have never been able to express their preferences for decisions that require abstract and complex reasoning.
Table of Contents
Developmental Disability Definition
Question: What is the definition of the term “developmental disabilities”?
Answer: Sec. 1385.3 of the Developmental Disabilities Rights and Assistance Act of 2000 (Public Law 106-402) defines a “developmental disability” as follows:
The term “developmental disability” means a severe, chronic disability of an individual 5 years of age or older that—
- Is attributable to a mental or physical impairment or combination of mental and physical impairments;
- Is manifested before the individual attains age 22;
- Is likely to continue indefinitely;
- Results in substantial functional limitations in three or more of the following areas of major life activity—
- Receptive and expressive language;
- Capacity for independent living; and
- Economic self-sufficiency;
- Reflects the individual’s need for a combination and sequence of special, interdisciplinary, or generic services, supports, or other assistance that is of lifelong or extended duration and is individually planned and coordinated, except that such term, when applied to infants and young children means individual from birth to age 5, inclusive, who have substantial developmental delay or specific congenital or acquired conditions with a high probability of resulting in developmental disabilities if services are not provided.”
Some examples of developmental disabilities include: intellectual disability, spina bifida, and cerebral palsy. However, before the term developmental disability can be correctly applied, the person’s functioning within major life activities needs to be examined to determine if that person meets all the criteria of the law.
Question: Is the term “intellectual disability” synonymous with the term “developmental disability”?
Answer: No. An intellectual disability by definition is always, however a developmental disability because it meets the criteria of the developmental disability definition.
Services and Support for People with Intellectual and
other Developmental Disabilities
Question: For people with intellectual disabilities, what kinds of services and supports are available for them so they can live successfully in the community?
Answer: The Home and Community Based Services (HCBS) waivers are part of a Medicaid program that is designed to support people with disabilities to live in the community instead of in an Intermediate Care Facility for Individuals with Intellectual Disabilities (ICF/IID) or nursing facility. The waivers fund supports and services for people with intellectual disabilities based on their assessed needs, such as residential support, employment exploration, training and coaching and a variety of health and wellness services, so that people can be a part of the shared community and live as independently as possible. Unlike regular or “State Plan” Medicaid, the HCBS waivers serve a limited number of people.
The Federal Centers for Medicare and Medicaid Services funds the Home and Community Based Services (HCBS) waiver program. Within this program, States can elect to furnish a broad array of services (excluding room and board) that are not otherwise covered under the Medicaid program as an alternative to institutional care. Passage of the HCBS statute in 1981represented a first step towards recognizing that individuals at risk of institutionalization, or who were currently institutionalized could be supported in their homes and communities, thereby preserving their independence and bonds to family and friends, at a cost not higher than institutional care .
The Act lists seven specific services that may be provided under the HCBS waiver program. These services are defined by each state Medicaid agency and approved by the federal Centers for Medicare and Medicaid Services. Some generally accepted definitions are as follows:
- Case management services: Services that assist eligible individuals to gain access to needed medical, social, educational, and other services. These services are comprehensive and must include assessment of an eligible individual, development of a specific care plan, referral to services, and monitoring activities.
- Homemaker services: Services that may include household services to maintain a safe and sanitary environment in areas of the home used by the beneficiary, such as changing the bed or light cleaning and laundering essential to the comfort and cleanliness of the beneficiary.
- Home health aide services: This refers to hands-on personal care of the beneficiary or services needed to maintain the beneficiary's health or to facilitate treatment of their illness or injury.
- Personal care services: Personal care means:
- Bathing, dressing, grooming, caring for hair, nail, and oral hygiene which are needed to facilitate treatment or to prevent deterioration of the beneficiary's health, changing the bed linens of someone who is incontinent, shaving, deodorant application, kin care with lotions and/or powder, foot care, and ear care; and
- 2. Feeding, assistance with elimination (including enemas unless the skills of a
licensed nurse are required due to the beneficiary's condition, routine catheter care and routine colostomy care), assistance with ambulation, changing position in bed, assistance with transfers.
- Adult day health care services. A community-based group setting that provides a coordinated program of professional and compassionate services. Services are designed to provide social and some health services to adults (18 years and older) who need supervised care in a safe place outside the home during the day. They also afford caregivers respite from the demanding responsibilities of caregiving. Adult day centers generally operate during normal business hours five days a week. Some programs offer services in the evenings and on weekends. Although each facility may differ in terms of features, these general services are offered by most adult day centers:
- Social activities—interaction with other participants in planned activities appropriate for their conditions
- Transportation—door-to-door service
- Meals and snacks—participants are provided with meals and snacks, those with special dietary needs are offered special meals
- Personal care—help with toileting, grooming, eating and other personal activities of daily living
- Therapeutic activities—exercise and mental interaction for all participants.
In general, there are three types of adult day centers:
- social (which provides meals, recreation and some health-related services)
- medical/health (which provides social activities as well as more intensive health and therapeutic services) and
- specialized (which provide services only to specific care recipients, such as those with diagnosed dementias or developmental disabilities. Caregivers typically select the type of center a recipient attends based on the care needed.
Forty-eight states and the District of Columbia offer community-based services through the HCBS Waiver program. (Note Arizona and Vermont offer home and community based services through a Section 1115 waivers rather than with Section 1915 (c ) waivers.
A smaller number of people are served in Intermediate Care Facilities for Individuals with Developmental Disabilities. Each state has its own system for determining eligibility for services. (Note: enter “developmental disability eligibility criteria” and the state for which you are seeking information, to find the eligibility criteria for each state.)
Question: How can I ensure that my ward’s needs for assistance with everyday activities of living are known and responded to by the professional caregiving team?
Answer: Ideally, when individuals with serious and profound intellectual disabilities are hospitalized a plan of care specifying the type of assistance they need to complete their activities of daily living (hygiene, feeding, toileting, mobility, etc.) accompanies them to the hospital. Sadly, this is not always the case, which can result in problems for the patient. For example, if food trays are placed in front of a patient who needs assistance bringing the food from the tray to the mouth, and no one offers this assistance, nurses may mistakenly conclude that the patient is unable to eat and recommend a feeding tube. You want to be sure that the hospital received a detailed plan of care from the patient’s usual caregivers. Any specific support strategies being followed by the community services agency related to mobility, communication or behavioral supports should be relayed to the hospital staff. (See an example of a Health Passport that can be used to convey this information. http://www.gucchdgeorgetown.net/ucedd/DDA/DDA-forms.html
Question: What does the concept person-centered services and supports encompass?
Answer: Person centered services result from an on-going process of listening and learning, focusing on the balance of what is important to someone now and in the future. This is balanced with what is important for someone and acting upon this knowledge in designing and providing services and supports in alliance with their family and friends. http://www.helensandersonassociates.co.uk/reading-room/how/person-centred-planning.aspx
Person-centered planning supports conversations around what is important to and important for the person including being a contributing part of the community; what matters in everyday life; what helps them be satisfied, comforted, fulfilled and happy; what the person’s values are; what their hopes, dreams and fears are; what supports are needed for the person to have a meaningful and quality life on their terms.
These same elements can be supported and honored as the person ages, acquires a disability and/or is dying. Self-determination applies to one’s whole life---and advance care planning, which can be accomplished as part of trusting and mindful person-centered planning, must be a part of the process. (Leigh Ann Kingsbury, 2005 http://learningcommunity.us/documents/pcp.eol.journal.pdf)
People with intellectual disabilities need to be afforded the opportunity to communicate end of life wishes. They have a right to be active participants in their healthcare, just as happens for people without disability labels. People with intellectual disabilities, their spouses, loved ones, friends, family members, guardians, provider staff, etc., need to know and understand what the options are. Physicians and other medical care providers need to have a greater understanding of the abilities of people with intellectual disabilities and their right to be an active part of this planning and decision-making process . Advance care planning should be a part of everyone’s life, whether one has a disability label or not. Without communicating one’s wishes, loved ones are left to make decisions of which they are often unsure and which could be in conflict with what the individual would desire. Use of a person-centered planning process should not, and in many places cannot preclude the use of a specific form or process for one’s advance directives and the naming of one’s health care agent (durable power of attorney, healthcare proxy, etc.), but a thoughtfully considered person-centered plan can be the foundation for developing more formal directives. (Leigh Ann Kingsbury, 2005) http://learningcommunity.us/documents/pcp.eol.journal.pdf)
When people experience severe or profound intellectual disabilities, their ability to communicate is significantly impacted, but they do convey information with body language and patterns of behavior. As a guardian to someone with a significant disability, it is your responsibility to get to know the person by spending time with them, interacting with people who know them well, and reading professional reports.
When spending time with someone who cannot verbalize, watch for how they react when a new person enters the room. Are they able to look at the person and convey some emotions? Does the person turn away? Some people may convey emotions and preferences through movements and reactions. Spending time and observing someone may provide a wealth of information about their personal preferences such as food likes and dis-likes, types of clothing, musical preferences, and relationship preferences. This information can be captured and shared using person centered thinking tools. http://sdaus.com/resources The challenge arises when a guardian needs to make a decision based on an abstract concept such as preferences for advanced technological support at the end of life. Discussions about these concepts are difficult and frequently avoided by people without intellectual disabilities. When a decision about advanced life directives need to be made, and the person is not able to convey specific information about their direct wishes, the guardian needs to partner with other people who know the person, their preferences and their health condition to assist in the decision-making.
Question: How can I learn about the person entrusted to my charge?
Answer: If a person-centered thinking and planning process has taken place in preparation for the person’s annual Individual Support Plan (ISP) the information documented should give you a great deal of information. You should be able to learn about what is important TO the person and what issues are important FOR the person. As a guardian, your role may be to help find the appropriate balance between these two points of view. Information should also be documented about the person’s preferences, rituals in which the person finds comforting, and some situations that make the person unhappy or highly agitated. You will also find documentation about who the person considers essential in their circle of support. This may include family members, friends, or even staff paid to provide services and supports. How the person communicates preferences, including behaviors that communicate likes and dislikes will also be recorded.
You can take this documented information and visit the person to see if you have the same impressions after spending time with him/her. Obviously, if you have time to get to know the person and speak with others who know them well, this is ideal. However, there may be occasions where you have been appointed a guardian, and are forced to make some serious decisions before you have had the time to personally get to know them.
A person with an intellectual disability may have paid staff that supports them to live their life in the community. It may include a single direct support professional or care attendant who has only worked with them for a short time, or it may be someone who has known them for many years. There may be other supervisory or professional health staff that provides supports. Any one of these individuals may have knowledge of the person, and may even have a close personal relationship that should be reviewed in order to gain insight into the person’s preferences.
Question: What is it reasonable for me to expect of each member of the professional support team: case manager/service coordinator, consulting specialists, hospitalist, nursing, occupational therapist, pharmacist, physical therapist, primary care practitioner, psychologist, registered dietician or registered dietician nutritionist, respiratory therapist, social worker, spiritual caregiver?
Answer: It is essential that a person with an intellectual disability play the central role in planning for services and supports. However, particularly when someone is facing a serious illness, there are likely a group of people who provide services and supports. In addition to family members and friends, some of the professional staff that have vital roles to play include the following:
- Case manager/service coordinator: These professionals may be found functioning within a state or local government agency on disability or within a private organization contracted by a state or local government. The Case Management Society of America defines case management as a collaborative process of assessment, planning, facilitation, care coordination, evaluation, and advocacy for options and services to meet an individual’s and family’s comprehensive health needs through communication and available resources to promote quality, cost-effective outcomes. http://www.cmsa.org/Home/CMSA/WhatisaCaseManager/tabid/224/Default.aspx Accessed 7-16-13)
- Consulting specialists: Any number of medical specialists can be involved in a person’s care in both the in-patient and out-patient settings. Once someone is approaching the end of a terminal illness, specialty consultation should be confined to specialists who will be able to prescribe therapeutic treatment to promote comfort.
- Hospitalist: This is the physician or nurse practitioner who is responsible for the day-to-day management of a person’s healthcare during an acute hospitalization. They make referrals to specialists, and will consult with the hospice staff or palliative care team if the person is enrolled in those services.
- Nursing: Registered nurses provide central assessment and treatment implementation in the hospital setting and perform the same roles in the person’s home through home health care. For individuals receiving residential services via a Home and Community-Based Services waiver, or a licensed Intermediate Care Facility for Persons with Intellectual and Developmental Disabilities, registered nurses assess health support needs, and either provide direct, skilled nursing care or supervise the care given by licensed practical nurses or direct support professionals.
- Occupational Therapist: These health professionals address the physical, cognitive, psychosocial, sensory-perceptual, and other aspects of performance in a variety of contexts and environments to support engagement in occupations that affect physical and mental health, well-being, and quality of life. (www.aota.org )
- Pharmacist: Health practitioners who provide patient care that optimizes medication therapy and promotes health, wellness, and disease prevention. (http://www.accp.com/docs/positions/commentaries/Clinpharmdefnfinal.pdf )
- Physical therapist: Health care professionals who maintain, restore, and improve movement, activity, and health enabling individuals of all ages to have optimal functioning and quality of life, while ensuring patient safety and applying evidence to provide efficient and effective care. In addition, physical therapists are involved in promoting health, wellness, and fitness through risk factor identification and the implementation of services to reduce risk, slow the progression of or prevent functional decline and disability, and enhance participation in chosen life situations. (www.apta.org )
- Primary care practitioner (PCP): Whether the person with ID sees a physician, nurse practitioner or physician’s assistant for their routine care, that PCP should continue a role in managing and advising the health care team. The PCP is familiar with the person’s health patterns and past treatment and most likely have played a role through the initial diagnosis and treatment of a terminal illness.
- Psychologist: These clinicians have a doctoral degree in psychology from an organized, sequential program in a regionally accredited university or professional school. The exact nature of clinical responsibilities is dictated by state statute in the state in which the clinician is practicing. (www.apa.org )
- Registered Dietitian (RD) or Registered Dietitian Nutritionist (RDN): A registered dietitian is a food and nutrition expert who has met academic and professional requirements per the Academy of Nutrition and Dietetics. Within clinical settings, these professionals work in the treatment and prevention of disease (administering medical nutrition therapy, as part of medical teams), often in hospitals, HMOs, private practice or other health care facilities. In addition, a large number of registered dietitians work in community and public health settings and academia and research. (www.eatright.org )
- Respiratory therapist: A person who has graduated from an approved respiratory therapist program and is qualified to provide respiratory care under the supervision of a physician. This care includes:
- the application of medical gases, humidity and aerosols;
- intermittent positive pressure;
- continuous artificial ventilation;
- administration of drugs through inhalation and related airway management;
- individual care; and
- instruction given to patients and their family or care givers.
- Social worker: Graduates of schools of social work (in the U.S.A. with either bachelor’s, master’s or doctoral degrees) who use their knowledge and skills to provide social services for clients (who may be individuals, families, groups, communities, organizations, or society in general). Social workers help people increase their capacities for problem solving and coping, and they help them obtain needed resources, facilitate interactions between individuals and between people and their environments, make organizations responsible to people, and influence social policies. Social workers may work directly with clients addressing individual, family and community issues, or they may work at a systems level on regulations and policy development, or as administrators and planners of large social service systems (Barker, 2003. The Social Work Dictionary and listed on the Web page of the National Association of Social Workers http://www.naswdc.org/practice/intl/definitions.asp).
- Spiritual caregiver: An individual who may or may not represent a traditional religious practice, but whose presence assists a person to make a connection between themselves and the other person. Their encounters assist the person to be connected or reconnected to their core beliefs, practices, and principles. (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2532767/)
Question: What is the role of the patient advocate?
Answer: An advocate is a “supporter, believer, sponsor, promoter, campaigner, backer, or spokesperson.” Many health care institutions have designated patient advocates who can facilitate a guardian’s access to the information needed to make wise treatment decisions for a ward and to ensure that the ward secures quality and safe care. If a guardian is concerned about the care a ward is receiving and cannot resolve the concern with members of the health care team, he or she should see if the agency employs a patient advocate.
Question: How can I best create a partnership with each member of the professional caregiving team?
Answer: Research has demonstrated the benefits to safety and satisfaction when people receiving services, support team members and the health care team work together. Good communication is essential. People with disabilities or their representatives need to ask questions, be prepared to give accurate medical histories and descriptions of their health problems, and adhere to treatment recommendations. Health practitioners need to listen to their patients’ preferences and their support team, and take the time to answer questions or to have ancillary health professionals that can provide adequate health education.
Some simple tips include the following:
- Come to meetings on time.
- Stick to the outlined agenda. A hospital discharge meeting is not the place to discuss complaints you have about a residential service provider, or how unhappy you are about someone’s work opportunities. It is the time to be sure that all team members understand the health condition, and what the treatment plan is.
- If you do not understand what is being told to you, say so. If you are representing someone with an intellectual disability, and you think their community supports are inadequate to implement the plan of care.
- When meeting with health care professionals, prepare questions in advance.
- Understand the roles of the various team members
- Be prepared to discuss the person you represent in terms of their strengths as well as their support needs.
- For information to assist you to actively participate in discharge planning meetings, refer to Transition of Care Guide (http://www.gucchdgeorgetown.net/ucedd/DDA/documents/Transition-of-Care-Guide.pdf)
Question: What do I do if I get conflicting advice from different members of the professional caregiving team?
Answer: This is not uncommon since different professional caregivers may be focusing on different patient goals. When this happens it is important to have a patient care conference where these differences can be addressed. An open meeting where everyone can freely explain what they believe is in the person’s best interests and offer a rationale for this belief is essential. Only those who know the person best will be able to sift through competing recommendations to reach a judgment about what is in the overall best interests of the ward.
When My Ward is in the Hospital
Question: What is a patient care conference? When should this take place? How can I make this happen?
Answer: A patient care conference is a formal or informal meeting of the health care team and the patient’s family/guardian to develop or revise the plan of care, transition or discharge plan, and patient goals. Most patient care conferences are initiated to prevent or address communication issues and to prevent or resolve conflict about treatment goals and interventions. Ideally the guardian would bring to such a meeting knowledge about who the patient is and to the extent these are known, patient preferences. The health care team brings knowledge about the patient’s health condition, prognosis, possible treatment goals, and recommended interventions. Indicators for patient care conferences include, but are not limited to: (1) changes in the patient’s status that might require new goals and/or a revised plan of care, (2) differences among members of the health care team and or the guardian and family members, (3) the need to transition to other care sites, and/ or (4) inability to discern who is responsible for overall health and well-being of the patient.
Format For A Patient Care Conference
- Introduce meeting participants
- Invite members of the health care team to update everyone on the patient’s medical condition and responsiveness to the current plan of care. Bedside nurses can help everyone to understand the patient’s functional level, degree of pain and suffering, and responsiveness to the current plan of care.
- Invite the family and guardians to ask questions about the medical condition, prognosis, and recommended plan of care and to talk about their concerns and values. Encourage them to speak to patient preferences and what they believe is in the best interests of the patient.
- Explore possible options and have the medical team make a recommendation. A time-limited trial of the therapy with clear endpoints defined may be useful.
- At the end of the meeting summarize what has been agreed to, clarify what the guardian can expect moving forward, and set a time for a follow-up meeting if needed.
Question: If I fail in engaging the professional caregiving team in conversations about what is most appropriate for the person I support, what other resources can I consult?
Answer: Each institution is different but there are many individuals who serve as patient advocates. Talk with the patient’s nurse about your concerns getting helpful information and ask what resources exist to help you. Ideally there should be a social worker or case manager who knows the patient from the community who is skilled in professional communication. Hospitals also have case managers. In addition most institutions have patient advocates or representatives who may also be called ombudspersons. Finally, you can always ask to speak with risk management or an ethics consultant or committee if your best efforts fail.
People with intellectual disabilities who live in the community have a range of people who provide services and support that need to be included in these conversations. While they do not have any legal standing to make decisions, they do have regular contact with the person, and may have known the person for many years. They can also provide information about social and medical history, and best ways to communicate with the person. They also have ethical and legal obligations for the provision of health and habilitation services of which the guardian should be knowledgeable.
Question: What is my role as a guardian in working with members of the professional caregiving team to determine where my ward will be discharged, and how can I ensure that the supports they need will be available to them?
Answer: Hospital discharge is the purview of the admitting or attending physician in collaboration with members of the hospital team. It is important to remember that contemporary hospital practice does not allow for anyone to remain in the hospital for any procedures or observations that can be completed as an outpatient. A hospital admission is indicated based on the severity of an illness and the intensity/skill level of service needed. Discharge needs should be anticipated shortly after the hospital admission and will depend on several factors:
- Will the current illness be resolved before discharge?
- Does the current illness represent a permanent or temporary change in vital functioning?
Question: How can I better understand issues related to someone’s quality of life when they experience a significant intellectual disability?
Answer: Please refer to the joint statement of the American Association on Intellectual and Developmental Disabilities and The Arc.
Question: How do I involve family and navigate family conflicts?
Answer: When family members are involved, even though a non-family member has been assigned as a guardian, this presents an opportunity to learn more about the person’s background and may provide insight into what are the factors that are important to their quality of life.
In the event that there is family conflict around decisions to be made, use the resources of service coordinators, and professional support teams if appropriate.
However, your legal standing as a guardian does usurp any contrary opinions that family members may offer. Refer to legal advocacy resources that may assist the family, and exercise your rights as a guardian if legal action needs to be taken on your ward’s behalf.
Question: How are the privacy needs and rights of individuals with ID managed? With whom can I share information?
Answer: Generally speaking, the HIPAA Privacy Rule at 45 CFR 164.502(g) requires covered entities to treat a person’s guardian as the person with respect to uses and disclosures of the person’s protected health information, as well as the person’s rights under the Rule. In addition to exercising the person’s rights under the Rule, a guardian may also authorize disclosures of the individual’s protected health information.
In general, the scope of the personal representative’s authority to act for the person under the Privacy Rule derives from his or her authority under applicable law to make health care decisions for the person. Where the personal representative has broad authority to act on the behalf of a living person in making decisions related to health care, such as is usually the case with a legal guardian of a mentally incompetent adult, the covered entity must treat the personal representative as the person for all purposes under the Rule, unless an exception applies.
Hospital Ethics Committees
Question: What is the role of the ethics committee or ethics consultant?
Answer: Historically, ethics committees involve individuals from diverse backgrounds who support health care institutions with three major functions: providing clinical ethics consultation, developing and/or revising policies pertaining to clinical ethics and hospital policy (e.g., advance directives, withholding and withdrawing life-sustaining treatments, informed consent, organ procurement), and facilitating education about topical issues in clinical ethics.
The underlying goals of traditional ethics committees are:
- to promote the rights of patients;
- to promote shared decision making between patients (or their surrogates if decisionally incapacitated) and their clinicians;
- to promote fair policies and procedures that maximize the likelihood of achieving good, patient-centered outcomes; and
- to enhance the ethical environment for health care professionals in health care institutions.
Ethics committees or select members often help resolve ethical conflicts and answer questions through the provision of consultations.
You should consider asking for an ethics consultation when two conditions are met:
- you perceive that there is an ethical problem in the care of patients, or
- health care providers have not been able to establish a resolution that is agreed upon by the patient/surrogate and the clinicians caring for the patient (Ethics is Medicine: University of Washington School of Medicine).
Role of Legal Surrogates
Question: How are judgments made about someone’s capacity to make health care decisions?
Answer: The terms ‘capacity’ and ‘competence’ are sometimes used interchangeably, but they have different meanings. ‘Competence’ is a legal designation; all adults are presumed competent unless proven otherwise, which means they have the legal authority to make a wide range of decisions for themselves. Someone can be declared competent over some matters (such as medical) and not others (such as financial). ‘Capacity’, as a clinical term, is task-specific and choice-specific. The physician will determine, by interviewing the patient, whether he/she has adequately communicated a choice and sufficiently shown understanding, reasoning, and appreciation to make the decision at hand:
- Does the patient understand the relevant information about the proposed medical intervention and alternatives?
- Does the patient provide clear and minimally coherent justification for his/her choice, incorporating his/her relevant values?
- Does the patient grasp the situation, risks, and benefits? Does the patient appreciate the relevant consequences that each option could have for his/her life?
- Has the patient communicated a stable choice?
Each of these components exists along a spectrum, and someone with capacity does not have perfect faculties or abilities, but sufficient. Someone could have the capacity to consent to y without necessarily having the capacity to refuse y; similarly, someone could have sufficient capacity to consent to x without having sufficient capacity to consent to y. The potential risks and benefits of the proposed medical intervention, based on the available options, determine whether the threshold for capacity is high, moderate, or low. This conceptualization of capacity is called the sliding scale model, and theory and practice support it.
Question: What is the “gold standard” for making healthcare decisions for people with significant intellectual disability? What are the best interests and substituted judgments standards for decision-making?
Answer: Individuals with significant intellectual disability do not have decisional capacity or competence to make significant decisions (e.g., those that present risk or considerable benefit) for themselves. Although they might have preferences, these preferences might be unknown, inconsistent, contradictory, or generally underdeveloped. As such, the best interest standard is thought to be the proper one when applied to these individuals. According to this standard, a surrogate must determine the net benefits and net harms of the available options, taking into consideration the numerous interests that could be furthered or thwarted in the short- and long-term. The point is to choose the medical intervention or plan that is the best option given the alternatives, based on what is generally in this individual’s interests. In order to make this judgment, guardians should learn, to the best of their ability and through collaboration with other support staff and loved ones, what the individual’s interests are. The ethical importance of this standard is to give weight to these interests, independent of the personal preferences of the guardian.
If the person formerly did have capacity and had wishes that were adequately known, then eligible surrogates are supposed to use the substituted judgment standard. This standard requires that the surrogate make the decision that the person would make if the person had capacity. To make this judgment, a surrogate has to engage in an imaginative exercise wherein he/she considers the person’s medical condition and treatment options from the person’s perspective. Given the person’s known values, expressed wishes, and life plans, the surrogate must evaluate the consequences of the different options based on what they would mean to the person. The ethical justification for this standard is that it is meant to guide decision-making in a way that respects the person as a formerly autonomous.
Question: What is my role as an ethically valid surrogate (family member or court-appointed guardian) for a person with an intellectual disability, who has never been able to communicate their wishes regarding health care, when health care decisions need to be made?
In this instance, an ethically valid surrogate decision maker:
- Has decision making capacity (understands the nature of the decision at hand, is able to reason in accord with a relatively consistent set of values, and can communicate a preference);
- Respects and honors the uniqueness of her/his charge and is committed to working with the professional team to secure the charge’s best interests.
In general, unless specified differently by state law, valid surrogates have authority to make any and all decisions a patient would make for him or herself related to their healthcare. This includes:
- Receiving the same medical information the individual would receive.
- Conferring with the medical team.
- Reviewing the medical chart.
- Asking questions and getting explanations.
- Discussing treatment options.
- Requesting consultations and second opinions.
- Consenting to or refusing medical tests or treatments, including life-sustaining treatment.
- Authorizing a transfer to another physician or institution, including another type of facility (such as a hospital or skilled nursing home).
(See the Guide for Health Care Proxies, Tool#9, from the ABA Toolkit: http://apps.americanbar.org/aging/publications/docs/consumer_tool_kit_bk.pdf)
Question: How does the law define my responsibilities for making health care decisions for my charge? Are there medical decisions that fall outside my legal authority?
Answer: A guardian has a number of restrictions on making medical decisions. First, in many states, there is a duty to maximize the participation of the person, use a substitute judgment standard when possible, and even seek a second opinion in certain circumstances.
The guardian may also not authorize extraordinary procedures without prior authorization from the court unless the person has executed a living will or durable power of attorney that clearly indicates the person’s desire with respect to that action. Extraordinary procedures may include, but are not limited to, the following medical interventions: psychosurgery, experimental treatment, sterilization, abortion, and electroshock therapy.
When making decisions about withholding or withdrawing medical care, the National Guardianship Association recommends the following:
“The NGA recognizes that there are circumstances in which, with the approval of the court if necessary, it is legally and ethically justifiable to consent to the withholding or withdrawal of medical treatment, including artificially provided nutrition and hydration, on behalf of the person under guardianship. In making this determination there shall in all cases be a presumption in favor of the continued treatment of the person.
If the person had expressed or currently expresses a preference regarding the
withholding or withdrawal of medical treatment, the guardian shall follow the wishes of the person. If the person’s current wishes are in conflict with wishes previously expressed when the person had capacity, the guardian shall have this ethical dilemma reviewed by an ethics committee and if necessary, submit the issue to the court for direction. . . ”
Question: How can I avoid unfair biases from coloring my end of life decision-making on behalf of intellectually disabled individuals?
Answer: People who have never experienced disability first-hand have a difficult time imagining life with disability. Ableism—biases against cognitively and physically disabled individuals—is pervasive throughout our society. As a result of ableism, many people falsely believe that a disabled life is a life not worth living, and many people negatively view the significant dependencies that can accompany certain disabilities. The barriers to imagining, understanding, and properly evaluating living with a disability are significant. They can make it extremely challenging to make end of life decisions, since it will not always be clear whether the life is worth preserving. Guardians should take stock of and be critical about the ableist attitudes that they and others could be bringing to the discussion. Humility, as a virtue, should guide a guardian’s investigation of what living with a disability is like for particular individuals. Guardians should be careful about making assumptions about disability, even profound intellectual disability. They should do what they can to educate themselves, looking to narratives from people with disabilities and the members of their circle of support about the possibilities for a high quality of life, how their preferences can adapt to their circumstances, and what forms of support can make a difference to the person.
Question: What are eight things a proxy can do to obtain good care for a patient?
Answer: [We may find the Guide for Health Care Proxies, Tool#9, from the ABA Toolkit helpful: http://apps.americanbar.org/aging/publications/docs/consumer_tool_kit_bk.pdf]
Question: How can I know if someone who cannot verbally communicate is experiencing pain?
Answer: In patients who are unable to self-report pain, other measures must be used to detect pain and evaluate interventions. No single objective assessment strategy, such as interpretation of behaviors, pathology, or estimates of pain by others, is sufficient by itself. A hierarchy of pain assessment techniques should be used that includes self-report (this may include vocalizations), assuming that pain is present when certain procedures or illnesses typically cause pain, observing the patient’s behaviors, reports from family members or caregivers, and attempting analgesic trials.
Good health care includes systematic pain assessments, with the use of behavioral pain assessment tools. Physiologic indicators such as changes in heart rate, blood pressure or respiratory rate should be minimized, as research does not support their sensitivity for discriminating pain from other sources of distress. (See position paper by the American Society for Pain Management Nursing, 2006.)
Question: What role should pain and suffering play when evaluating treatment options?
Answer: Effective pain and symptom management is an ethical obligation for all healthcare providers and organizations. Fostering effective pain management at the end of life requires the understanding that such care may prolong life, even though these efforts to relieve pain at times may be perceived as hastening death. In all instances where the primary intent of therapeutic interventions is to alleviate pain and suffering and not to cause death, aggressive pain management is ethical and appropriate. No obstacles should be placed in the way of providing this care. In rare circumstances, when pain and suffering are resistant to treatment, sedation may be therapeutic and medically appropriate to obtain relief if consistent with the express wishes of the patient. Patients, families, caregivers, and physicians continue to struggle with the task of caring for the dying and how best to relieve their suffering. The debate on the moral and medical challenges of care for the dying requires a response. That response demands extraordinary efforts to improve end-of-life care and optimal management of pain and suffering. We have the knowledge and ability to deliver skillful and effective control of pain and suffering at the end of life. (American Society for Pain Management Nursing Position Statement on Pain Management at the End of Life, 2003.)
Hospice and Palliative Care
Question: When is hospice appropriate and how can I get a hospice consult?
Answer: A person must generally be considered terminal or within six months of death to be eligible for most hospice programs. Notify your ward’s doctor that you would like to make a referral to hospice. Often a hospice program representative will make an effort to visit the patient within 48 hours of that referral, providing the visit meets the needs and schedule of the patient and family/primary caregiver. Usually, hospice care is ready to begin within a day or two of the referral. However, in urgent situations, hospice services may begin sooner.
Question: What changes for someone after they are enrolled in hospice?
Answer: It is important to remember that hospice is a service not a place. Hospice services can be administered in any setting, including the family home, a group residence, an independent-living apartment, nursing home or hospital. Additional personal care, homemaking and skilled nursing services may need to be added to supplement the services of hospice. If the person resides in a home that is licensed as an intermediate care facility for people with intellectual and developmental disabilities, these services are already available. For people who are eligible for a Home and Community Based Services waiver, these services will need to be authorized.
Question: When is a palliative care consult indicated and how can I get a palliative care consult?
Answer: Whenever you believe your ward is experiencing distressing symptoms inadequately managed by the present plan of care you can request a palliative care consult from your ward’s physician or nurse.
Question: What is the difference between palliative care and hospice?
Answer: You must generally be considered to be terminal or within six months of death to be eligible for most hospice programs or to receive hospice benefits from your insurance. There are no time restrictions for receiving palliative care. Palliative care can be offered at any time, at any stage of illness whether it be terminal or not. For a description of other ways palliative care and hospice are different consult the national care givers library at: http://www.caregiverslibrary.org/care
Question: In medicine, there are basically three overarching goals: 1) restoration and cure; 2) stabilization of functioning; and 3) preparation for a comfortable and dignified death. How can I know which is appropriate for this person?
Answer: The answer to this question begins with an understanding of the person’s current health state and if the medical team assesses that continued treatment would be futile. With this question answered, it still depends on the individual and their values and preferences. Some people may hold religious values that stress the importance of not interfering with the natural course of life, and still others may desire to remain cognitively functioning so that they may witness certain special life events such as the birth of a child or a wedding or holiday.
Understanding the preferences for quality of life is emphasized in the disability service sector through processes that implement person-centered planning, where it is determined through conversation, observation of a person’s reaction to certain events, etc. what is important for and to the person. The information learned through this process, even for people with limited communication capacities should guide the decision to set one of the 3 goals noted above.
Question: Many variables influence decisions to initiate, continue, withhold, or withdraw, potentially life-saving or life-prolonging medical interventions. What should I know about changes from baseline functioning, prognosis, anticipated benefits and burdens and the benefit/burden ration, quality of life considerations, the ability to continue activities that give meaning and pleasure, changing needs for care and availability of this care, distressing symptoms?
Answer: It is important to understand the person’s quality of life prior to the current terminal illness. Someone who experiences an intellectual disability or other developmental disability may have never had the ability to converse, or move about independently. They may have always required the assistance of others to complete their activities of daily living. They may have enjoyed a good quality of life while at the same time requiring extensive supports to go about their day. For someone with this level of cognitive and physical capacity, one would not deem their quality of life severely limited simply because they are dependent on others. On the other hand, someone who had been very physically active and enjoyed walking and exploring their neighborhood and other novel places, the expectation that they could no longer do that might definitely weigh on the choice of life sustaining treatment (LST).
For this reason, guardians are obligated to familiarize themselves with their assigned ward, and make frequent visits to get to know them in various situations. If the guardian was recently assigned, then they need to interview people closest to the individual in their living situation or other places where they spend significant time. If family members or close friends are available, they should also be interviewed.
Question: What are the different senses of ‘futility’ as a term?
Answer: ‘Futility’ as a term is subject to ambiguous usage and interpretation, so whenever a treatment option is called “futile” by someone, clarification should be requested. There is an important distinction between medical futility on the one hand and normative futility on the other. A treatment is medically futile if it will not resolve or ameliorate the intended medical condition; for example, antibiotics are medically futile for mending broken bones. A treatment is normatively futile if, based on the weighing of various values, it is believed that the treatment will not be sufficiently beneficial to the patient to justify it. For example, it can be argued that using extraordinary means and large amounts of resources to maintain the life of a patient in a permanent vegetative state for twenty years is normatively futile. Both types of judgment can be debated. For example, different physicians could disagree about the possibility of therapeutic efficacy of certain treatments. When it comes to medical futility, though, there is a fact of the matter that can be determined scientifically: The treatment has the potential to remedy the medical condition, or it does not. When there are judgments about normative futility, however, there is much greater room for disagreement among medical professionals, caregivers, family members, ethicists, and guardians. This disagreement arises from people bringing disparate values to the table or weighing those values differently.
Question: Too often medical care focuses on “fixing problems” rather than on helping people to achieve health, wellness, or good dying. How can I get members of the team talking about the goals of the current plan of care and whether or not these need to change?
Answer: It is essential for the individual and their decision-maker to understand the current state of health, prognosis and treatment options. Starting this conversation may feel uncomfortable even for professionals, and when supporting someone with an intellectual disability, the need to provide communication in a manner that they can easily comprehend is essential. There are guides that include questions to include as part of this discussion that have been developed for the general population http://theconversationproject.org/starter-kit/intro/ that can be helpful and adapted for people with an intellectual disability. There are also two guides for end-of-life planning that were developed specifically for people with intellectual disabilities that include an array of issues to be considered and are formatted as workbooks so the person’s wishes can be documented.
Question: When is it time to think about decisions that need to be made at the end of life? Who can help me with those decisions?
Answer: End-of-life decision making is not a single event that occurs in the midst of a critical illness. It is an ongoing series of choices based on life experiences, family and friend support systems, as well as health issues As a person’s life progresses or as changes occur in a person’s health condition, opportunities arise for discussions with the person about end–of-life planning. This approach enables documentation of these conversations and records the person’s preferences and values regarding end-of-life treatments and other types of medical care.
End-of life planning should occur within a person-centered planning framework. Each person and their health care decision-maker need to decide the extent to which s/he is comfortable in planning. The person and anyone who supports his or her decision-making will select those people he or she wants to be part of the planning process. This can include family members, friends, paid staff, and health care-givers. However it must be recognized that some people will choose to forego this process. End-of-life decision making is not a single event that occurs in the midst of a critical illness. It is an ongoing series of choices based on life experiences, family and friend support systems, as well as health issues
Question: How might a values inventory be used to facilitate advance care planning?
Answer: The Values History Form was developed at the Institute of Public Law, University of New Mexico School of Law. The form is not a legal document, although it may be used to supplement a Living Will, a Durable Power of Attorney for Health Care, or an Advance Directive for Health Care, if you have these. A guardian could work with the person with a disability and members of their support team to complete this form to guide decision-making. The Values History Form is not copyrighted, and you are encouraged to make additional copies for friends and relatives to use.
Question: It is not unusual to hear someone say “there are things worse than death.” What are some of these things and how can you know if your ward feels that way about what she/he is experiencing?
Answer: With current medical technology, people can be kept alive even if there is no chance that the treatment will reverse or improve their condition. Opinions about what type of restrictions to daily activities would be intolerable are highly individualized and subjective. In the instance of someone who experiences a physical or cognitive disability, there needs to be consideration of limitations that may have been part of their entire life. For example, for someone who was always able to walk independently, the need to be confined to a bed or to have to use a wheelchair for mobility may be a reason to refuse certain medical treatments that prolong life. On the other hand, if someone has always had to use a wheelchair for mobility, the idea of that continuing throughout their life is expected.
Another example is an illness that robs someone of their cognitive functioning. If someone’s cognitive functioning has always limited their ability to communicate with speech, the thought of not being able to communicate through speech would not be a consideration in determining the use of medical treatments.
There is a tool that has been developed by the American Bar Association Commission on Law and Aging (Are Some Conditions Worse Than Death?) that can be helpful in sorting out consideration of pursing treatments that will deep the person alive or not. http://www.americanbar.org/content/dam/aba/migrated/aging/toolkit/tool2.authcheckdam.pdf
Question: What are advance directives? How do I know if an advance directive is appropriate for the person I’m supporting through my decision-making?
Answer: These directives pertain to treatment preferences and the designation of a surrogate decision-maker in the event that a person should become unable to make medical decisions on their own behalf. Advance directives generally fall into three categories: living will, power of attorney and health care proxy. http://www.medterms.com/script/main/art.asp?articlekey=2158
Question: Is an advance directive appropriate for the person for whom I am making decisions?
Answer: Advanced directives are recommended for anyone. The type of advanced directive is a matter of personal choice and state policy and regulations. Although recommended, it must be a matter of choice for the individual to prepare one after they have been appropriately educated as to the benefit of such a document.
Question: When is a Do Not Hospitalize (DNH) order appropriate?
Answer: We each bring our life experiences and ourselves to healthcare decision-making. At times our assumptions, fears, and biases may interfere with our ability to make valid decisions about medical treatment for the people we support as surrogate decision-makers . What are some common challenges?
- I am afraid to authorize a decision to withhold or withdraw life-sustaining treatment because then I will be responsible if death ensues.
- I find it hard to imagine that anyone would want to live with the quality of life he/she has. If this were I, an able-bodied, able-minded person, I would welcome death.
- I am afraid that I might err on the side of not doing enough. I would rather be guilty of doing too much. Reverse discrimination.
- If I authorize a medical decision to withhold or withdraw feedings will he/she starve to death?
Question: What do I need to recognize about how culture and/or religion can influence decisions made on behalf of someone?
Answer: It can be helpful to determine whether there are cultural or religious influences on preferences for the patient’s medical care—whether those preferences are being expressed or implied by members of the medical team, the patient’s family, or others who are involved in the provision of services and supports.
For a guardian making end of life decisions for a person with an intellectual disability who has not been able to effectively communicate his or her wishes around health care, it is first and foremost necessary to determine the morally permissible range of treatment decisions that fit within the best interest standard. The application of this standard, at least initially, should be without reference to culture or religion. In other words, ‘best interest’ should not be interpreted in a way that gives weight to cultural or religious norms or ideals. After the morally permissible range of decisions has been discerned, then the guardian can determine which decision within that range fits the patient’s cultural preferences.
Patients with severe or profound intellectual disability have always lacked decisional capacity, which means they do not have the ability to have robust religious commitments. However, they may have membership within a religious community based on the family’s patterns of worship, or patterns that have developed with the assistance of staff that have ensured participation in a religious community. When this is the case, guardians should use this information about the ward to decide amongst morally permissible options. A guardian should not bring in his/her own religious or cultural beliefs to the decision-making process; if the guardian finds it too difficult to set aside these beliefs, then he/she should officially recuse herself and let the courts know that a new guardian is needed.