Helping Caregivers Understand the Challenges of End-of-Life Decision Making for Those with Mental Retardation

Birth is a beginning and death a destination. Those of us who are considered to have capacity to make decisions for ourselves are nevertheless often unprepared as we face the end-of-life. We live in a death denying culture, which frequently prevents many of us from considering our options when we are mentally, emotionally and physically able. Those who are developmentally disabled and mentally retarded usually have to depend on caregivers to facilitate end-of-life choices and/or make those decisions for them, depending on their capacity. This article addresses the many complexities and barriers to sensitive end-of-life care and decision making for those whose developmental disability is mental retardation, specifically those with cognitive impairment.

By definition, a developmental disability must originate before the age of 22. This may include mental retardation, some forms of cerebral palsy, Autism Spectrum Disorder and neurological impairments. People with developmental disabilities may have trouble learning as quickly as others and/or expressing themselves clearly. Many have more than one disability.

More than 280,000 people in New York State are thought to have developmental disabilities. That number is rising because individuals are living longer due to medical advances, better medical care, and increasing numbers of community-based residential and other services, which improve quality of life. Medical advances also result in people living over extended periods of time even with serious, chronic and terminal illnesses. Caregivers face many challenges because there may be varying levels of cognitive impairment that affect the need for others to make health care decisions on behalf of the individual.

The combination of an individual’s will to live, the medical profession’s mission and mantra to save lives at all costs, and our cultural difficulty with facing death, often result in inertia. In the case of those with developmental disabilities, the issues become even more challenged. Both personal and professional caregivers are burdened by the difficulties of making decisions for those in their care. These highly charged decisions are commonly wrought with ignorance and disagreement around an individual’s ability to understand and participate in their own decision making. Caregivers are also very commonly challenged with their desire to protect those in their care, especially when they are unsure about what is best for them.

In the absence of advance directives (Health Care Proxies and Living Wills), all of us can be subject to medical interventions that serve to prolong death rather than prolong life. Cardiopulmonary resuscitation (CPR) performed on a frail person who is already declining from a terminal illness, can do and often does more harm than good. Once the heart starts to beat again, the person who is resuscitated is sometimes left in even worse medical, psychological and/or spiritual condition. Making decisions about how we want to be cared for when we are critically ill is ideally done when we are emotionally, physically and intellectually capable. When we are not conscious, competent or deemed to have capacity to decide, as is often the case with individuals with developmental disabilities, then we must rely on others, primarily a Health Care Agent, to make these decisions for us.

There is a trend toward increased awareness about, acceptance of and accessibility to end-of-life care for the non-developmentally disabled population, including palliative and hospice care. Palliative care is an interdisciplinary therapeutic model, which is targeted to the care of patients with all types of chronic progressive illnesses and is focused on helping patients and their families maintain a satisfactory quality of life, manage the burden of illness, and reduce the sources of suffering throughout the course of the disease. Contrary to popular belief, palliative care can be delivered along with aggressive and curative treatment. Hospice services are generally delivered in an individual’s home at the point that curative, aggressive care is determined to be ineffective or the individual declines further treatment. The goal of hospice care is to provide comfort and support, alleviate physical, emotional and spiritual distress, during the process leading up to death and during the time of active dying.

While palliative and hospice care can serve individuals living in group homes of all categories, sadly, individuals with developmental disabilities rarely receive palliative care through hospice. One hospice program reported that of 1200 people served in the past year, only four were developmental disabilities. One clinician, who worked in this hospice for 30 years, could not remember even one person who was developmental disabilities. Most individuals with this diagnosis die in hospitals and, at best, might spend their last days in a nursing home where they may or may not receive hospice services.

As we examine the challenges faced by caregivers of those with mental retardation at the end-of-life, let us consider Jose (name has been changed to protect client’s confidentiality).

Jose is a 27-year-old male, diagnosed with a mild to moderate developmental disability, with a full-scale IQ of 51. He lives in a community residence with other developmentally disabled adults with varying levels of functionality. There are staff present 24/7.

Jose has relatively strong verbal skills, can follow multistep instructions and make simple decisions, but he also requires staff direction. He cannot tell time. His reading and writing abilities are limited to writing his name and recognizing some road and community signs. He is independent in activities of daily living but requires reminders from staff. He is unable to travel or make purchases on his own. He has good social awareness, knows the names of people regularly encountered and relevant information about them. He is able to label emotions and distinguish between basic emotions.

Jose lived with his family until three years ago and was then moved into his current group home. His family has had moderate, but inconsistent involvement in Jose’s daily life. Due to other family stressors, they do not often visit at the residence and have been unable to arrange for visits home. They occasionally attend treatment-planning meetings, but this participation has also been inconsistent. Because he is an adult, Jose’s parents are no longer his legal guardians, although they could apply for that status, if they so choose.

Jose was diagnosed in April 2008 with a cancerous tumor of the bile duct(s). His symptoms of abdominal pain, anemia, yellowing of skin (jaundice), chills, fever, itching, weight loss, bloating, nausea and loss of appetite, occurred suddenly. It was necessary to perform surgery and subsequently he received chemotherapy. Despite treatment of chemotherapy and radiation, the cancer spread to his liver and he became even sicker and has a poor prognosis. He had a very poor reaction to the chemotherapy.

Jose has never been educated about death and dying and has not participated in any rituals, including funerals. When someone has died in his life their absence has been either ignored or explained away. While he is aware that he is very ill, he has not been asked what he wants or what he thinks. Despite the progression of his illness, there are no advance directives in place and Jose does not have an appointed health care agent. Jose has recently expressed a desire to stop treatment, because he has experienced significant discomfort, negative side-effects and he has said on numerous occasions that he is afraid. Despite these facts, Jose’s family members and his professional caregivers have generally avoided talking with him about his condition and prognosis but have persistently encouraged Jose to continue with the chemotherapy and other aggressive care. Furthermore, the issue of who is in a position to make decisions about Jose’s care is unclear.

Jose’s case is not exceptional. There are many myths about this population with regard to their understanding about end of life and their capacity to participate in decisions that affect their life…and death. Many caregivers struggle with how much to explain and worry that the information, especially when the prognosis is grim, will be too upsetting to the individual.

Among the myths, it is commonly believed that those with mental retardation:

  • Cannot comprehend the finality of death;
  • Are incapable of making end-of-life decisions;
  • Do not fully experience grief and just forget that their loved ones are gone;
  • Will be traumatized from participating in end of life rituals (funerals, etc);
  • Can’t form or sustain attachments;
  • Don’t experience pain in the same ways that those without disabilities experience it.

In addition to the myths that impede the involvement of an individual with mental retardation in their own health care decisions, other barriers that come into play include:

  • Caregivers commonly wanting to protect their loved one from having to make these kinds of decisions;
  • Caregivers often have conflicting views about the individual’s capacity to make his/her own decisions, including the ability to decide on a health care agent;
  • Caregivers – and society—often lack knowledge about the Health Care Decisions Act for People with Mental Retardation, which provides guidance about the appointment of a surrogate decision maker when a health care agent has not been assigned;
  • Confusion among two terms– competency and capacity, which are commonly used interchangeably in viewing whether or not a person with mental retardation has the ability to make his/her own health care decisions. Competency is a general term related to a person’s over-all ability to understand. IQ can be taken into account when looking at competency; Capacity on the other hand, is more subjective and relates to one’s perceived ability to understand a specific issue or question. Capacity is not a legally rendered decision. According to OMRDD regulations, capacity for making a medical decision must be determined by the physician treating the illness but corroborated by either another physician or licensed psychologist with experience, specified by the Office of Mental Retardation and Developmental Disabilities (OMRDD), in working with and treating individuals with developmental disabilities.

Further complicating the process are the myriad legal and legislative policies and regulations which are/can be:

  • Confusing and contradictory;
  • Manipulated and differently interpreted by the multiple stakeholders with different agendas. Stakeholders include the public regulatory agencies such as the OMRDD, families, medical providers, mental health providers, legal services providers, advocacy groups, residential and other program providers.

Appointment of a Health Care Agent by executing a Health Care Proxy is not generally considered to be a complex decision. A person simply has to understand that he or she is giving another person (the health care agent) the authority to make medical care decisions on his or her behalf if and when he or she is not capable of making these decisions. If an individual were determined not to have capacity for a specific health care decision, then the health care agent would be able to step in.

Most agencies serving people with developmental disabilities have not yet established policies and procedures to guide their practices in helping their clients execute a health care proxy and appoint a health care agent. Many are not yet aware of the option and guidelines established by the Office of Mental Retardation and Developmental Disabilities.

In Jose’s case, the various stakeholders, including his family and professional caregivers are persistently advocating for continued aggressive treatment. In the absence of a determination regarding capacity it isn’t clear who in fact can make these decisions, adding stress and confusion to an already highly emotionally charged situation. Given the description of Jose’s skills and strengths, it likely that he would be assessed as capable of appointing a health care agent. He would require an additional assessment of capacity regarding his ability to make health care decisions related to future treatment including discontinuing aggressive and/or potentially curative treatment. Again, based on the description of Jose, it is quite possible that he would be determined to have the capacity to make medical decisions regarding his treatment. If however, it was determined that he did not have capacity for a specific decision and/or his cognitive abilities become further impaired by his illness to the extent that he is unable to make decisions, either his Health Care Agent or a surrogate would be appointed.

The Health Care Agent is the first in the chain of surrogate decision makers. If there is no health care agent appointed and the person is determined not to have capacity for a specific decision, surrogate decision makers can then decide. They must base their decisions on their knowledge and understanding of the individual’s preferences, values and beliefs, and in the absence of this knowledge based on the individual’s best interest. Best interest is guided by several factors including: dignity and uniqueness of the person; preservation/restoration of health; relief of suffering. The Health Care Decisions Act for Persons with Mental Retardation (HCDAPMR) is a relatively new law that became effective in March, 2003. It has been amended several times and now provides for the following chain of surrogate decision makers:

  1. Health Care Agent
  2. Legal Guardian
  3. Actively involved spouse or domestic partner
  4. Actively involved child over 18 years of age
  5. Actively involved parent
  6. Actively involved sibling over 18 years of age
  7. Close friend (an affidavit is required and the person cannot work in the same residence that the person resides).
  8. Consumer Advisory Board for Willowbrook Class Members
  9. Surrogate decision-making committee (SDMC) or court.

In this complex world of decision making which requires frequent assessments and reassessments, personal and professional caregivers can be confused and conflicted. They may be faced with making decisions that are very difficult or need to accept the autonomy and dignity of their loved one even in the face of decisions that they disagree with. They may also be faced, as in the case of the “friend” who may be a professional caregiver, with the fear of liability. Armed with information, education and a deep respect for the ailing individual, the role of the caregiver becomes clearer, the stress reduced, and energy is freed to be a supportive, respectful, loving and healing presence.

In summary, end of life care decisions are intensely difficult under the best circumstances—i.e., when they are made in advance, directly by the individual who is ill, but at a point where they have the cognitive, emotional, physical and intellectual ability to make sound decisions. When caregivers are in this role, particularly on behalf of loved one with a disability such as mental retardation, the decisions are not only incredibly stressful and challenging, but require many additional steps and considerations. Having a trusted professional who fully understands the issues – emotional, legal, ethical and civil rights-related – can be tremendously helpful and reduce the overwhelming nature of these decisions.

Founded in 1934, F∙E∙G∙S Health and Human Services System is one of the largest, most diverse not-for-profit health and human services providers in the region, offering a comprehensive and integrated network of programs for people with disabilities as well as many other populations. Among its many service areas are a full spectrum of care for those with developmental disabilities. F∙E∙G∙S also operates Partners In Dignity, the Regional Care Center in the UJA-Federation Jewish Healing and Hospice Alliance. This program has assisted thousands of individuals coping with life-limiting, chronic and terminal illness and end of life. Caring professionals guide families through the complex maze of medical care, providing them with information, linkages and advocacy for appropriate care; individual and group counseling; spiritual care; community education and professional training; and volunteer services and opportunities. The Partners in Dignity team have expertise in working with families and training professionals who work with those with developmental disabilities, educating them about end of life issues and concerns for this population. They are trusted resources and guides.

For more information about FEGS Partners in Dignity Program, contact (516) 496-7550. For more information about FEGS Services, call (212) 366-8400 or visit us at

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