Hospice, Diversity, Equality, & Inclusion

Providing hospice and palliative care to people with intellectual disabilities poses a number of unique challenges. Although each person’s level of intellectual ability will vary, all individuals with intellectual disabilities have a diminished ability to understand information, a decreased ability to function independently and marked developmental delay. Many are nonverbal or have other barriers to communication, and a significant percentage also suffer from Autism Spectrum Disorder, or ASD. People with intellectual disabilities are also more likely to have comorbidities associated with their underlying diagnosis. For example, adults over the age of 60 with Down syndrome have a 40% higher incidence of Alzheimer’s disease than similarly aged healthy adults. They also have a higher incidence of cardiovascular disease and certain cancers. 

Other challenges to caring for people with intellectual disabilities, especially at the end of life, include:

• Poor or diminished insight, leading to decreased ability to share in decision-making
• Unusual communication patterns around expressing symptoms or distress
• Challenging family systems and social circumstances
• Behavioral and psychiatric problems

Studies have also shown that people with intellectual disabilities experience significant health inequities that lead to overall poorer health and earlier death. According to one study conducted by the National Health Service in England, men and women with intellectual disabilities had a life expectancy of 63 years and 65 years respectively. This was a full 16 years lower than the overall life expectancy in the country at the time.   

Despite this, people with intellectual disabilities are living longer lives. The life expectancy for people with Down Syndrome, for example, increased from 10 years in the 1940s to 47 years in 2007, according to the CDC.  As a result of this improvement, more people with intellectual disabilities are developing chronic life-limiting illnesses associated with aging. Many of these people will require. palliative and hospice care at the end of their lives. 

Caring for People with Intellectual Disabilities

Despite the unique challenges faced by people with intellectual disabilities, their needs when they are living with a life-limiting illness are the same as anyone else’s.. They include 

• Physical issues such as the management of pain and other distressing symptoms including nausea, vomiting, shortness of breath, mobility problems and fatigue.
• Psychosocial issues such as isolation, loneliness, fear of the unknown and the need to be seen, heard and understood by caregivers and the medical team
• Spiritual issues such as the need for comfort and a sense of meaning

Meeting these needs involves seeing each patient as an individual and learning about their unique ways of making their needs known. For example, many people with intellectual disabilities do not communicate discomfort in typical ways. They may become hostile or uncooperative, irritable or withdrawn. They may refuse to eat, or wake frequently during the night. Some people may cry or become agitated but be unable to communicate the source of their distress. This can be extremely challenging for hospice staff, especially if the individual does not have an involved support system of family or friends. 

Pain management can  be especially challenging when working with patients with intellectual disabilities. Many patients with mobility issues (for example, those who are wheelchair dependent) have chronic musculoskeletal pain that worsens at the end of life. Many of these patients will not communicate their pain verbally, but instead will have behavioral changes that indicate that something is wrong. Some nonverbal patients may actually injure themselves when they are hurting, biting or excessively rubbing the painful body part or banging their head against a wall. Some people demonstrate extreme sensitivity to sound or touch and refuse efforts by caregivers to provide comfort measures or alleviate their distress. 

With that being said, there are a number of tools available for assessing distress in nonverbal individuals, including this Distress and Discomfort Assessment Tool developed by a learning disability and palliative care team at Northgate Hospital in Northumberland, U.K. It is incumbent on hospice and palliative care providers to give staff access to as many of these tools as possible. Additionally, staff should receive training in how to tailor their communication about the person’s illness, prognosis and options for care to the individual’s ability to understand. This may involve 

• Using materials written in very simple language with pictures illustrating concepts that may be difficult to grasp
• Presenting information in pictures or video format
• Role playing a situation 
• Using family caregivers to help the patient understand what’s being presented to them.

Whenever possible, all adults with an intellectual disability should have the maximum amount of  autonomy in directing their care. Caregivers should use every tool available to them to elicit meaningful responses to questions about goals of care, invasive treatments or measures to prolong life. However, if an individual with an intellectual disability lacks the capacity to make informed decisions, the court may appoint an advocate guardian to assist the hospice care team. Depending on the person’s level of intellectual disability, this advocate may have the ability to make all, most or only a few decisions about the care the person will receive. However, even if an advocate has been appointed, the care team must make every effort to involve the patient, their family and other caregivers in developing a treatment plan. 

Sources

“Intellectual Disability and ASD”. Children’s Hospital of Philadelphia Research Institute. https://www.research.chop.edu/car-autism-roadmap/intellectual-disability-and-asd 

“Palliative Care and Intellectual Disabilities”. University of Hertfordshire. https://www.intellectualdisability.info/physical-health/articles/cancer,-palliative-care-and-intellectual-disabilities 

“Cardiovascular Complications of Down Syndrome: Scoping Review and Expert Consensus”. AHA Journals. https://www.ahajournals.org/doi/10.1161/CIRCULATIONAHA.122.059706 

“Confidential Inquiry into premature deaths of people with learning disabilities (CIPOLD)”. Norah Fry Research Centre, University of Bristol. https://www.bristol.ac.uk/media-library/sites/cipold/migrated/documents/fullfinalreport.pdf 

“Living with Down Syndrome”. U.S. Centers for Disease Control and Prevention. https://www.cdc.gov/birth-defects/living-with-down-syndrome/ 

“How social care staff can recognise and manage pain in people with learning disabilities”. Public Health England. https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/656269/Social_care_staff_supporting_pain_management_in_learning_disabilities.pdf 

“Understanding pain in patients with intellectual disabilities”. American Nurse. https://www.myamericannurse.com/understanding-pain-in-patients-with-intellectual-disabilities/ 

“Distress and Discomfort Assessment Tool”. St. Oswald’s Hospice and Northumberland Tyne & Wear NHS Trust. https://www.stoswaldsuk.org/wp-content/uploads/2022/11/disdat-22.pdf 

“Disability Resources”. Disability Rights Florida. https://disabilityrightsflorida.org/disability-topics/disability_topic_info/types_of_guardianship

Hospices across the U.S. offer services to U.S. veterans and their families that strive to provide quality end-of-life care that recognizes the unique needs of this population. Services may be accessed through several channels, including:

• The Department of Veterans Affairs, which offers inpatient hospice services through a network of Community Living Centers or VA nursing homes. The VA also partners with community home hospice agencies that provide hospice care in the veterans home. These services are provided at no charge as long as the veteran meets established criteria, e.g. has a life-limiting illness and a projected life expectancy of fewer than six months. Patients seeking hospice services will need a referral from their VA primary care provider. If you wish to take advantage of this benefit, you will need to first sign up for VA health care. Learn more about how to do so and what information you will need on the Veterans Affairs VA Benefits and Healthcare web page.

• We Honor Veterans, a partnership between the National Hospice and Palliative Care Organization and the VA, which works with community organizations across the United States to provide compassionate end-of-life care to U.S. veterans and their families. The program works to educate hospice providers in the provision of care focused on “respectful inquiry, compassionate listening, and grateful acknowledgment” through a network of over 4,000 partners across the U.S. These partners include:
  • VA Hospice Partners – Hospice providers who have received education and training in providing veteran-centric care, including trauma-informed care for veterans suffering from PTSD, substance use disorder, military sexual trauma, and other psychological issues related to their military service and ensuing life experiences. 
  • VA Community Partners – These include hospitals, skilled nursing facilities, nursing homes, home health agencies and funeral homes that have shown a commitment to recognizing and serving the unique needs of U.S. veterans. 

Partners in the WHV program are ranked from Level One to Level Five based on their reaching certain benchmarks. For example, Level One partners must demonstrate that they ask appropriate questions about veterans’ military service and recognize what the answers may mean. These organizations use resources provided by WHV to educate staff on ways to honor veterans and help them tell their stories as they approach the end of their lives. 

Level Two partners actively work towards building capacity within their organizations, while Level Three through Five work with local and statewide organizations to build capacity within the surrounding community. 

Those seeking care through the WHV program can find a partner in their area by searching this interactive database provided on the WHV website. 

• Medicare – Veterans who are either disabled or over the age of 65 are eligible for Medicare and may access hospice care using the Medicare Hospice Benefit at any time. 

Unique Needs of Veterans at End of Life

Veterans are, first and foremost, individuals, each with their own values, goals and preferences around end-of-life care. Nevertheless, many veterans share similar experiences and, as a result, have similar, specialized needs. Some factors that may influence veterans receiving hospice care include:

Post Traumatic Stress Disorder

Between 7% and 13%  of combat veterans suffer from PTSD, the symptoms of which can become more prevalent and disturbing at the end of life. Pain, shortness of breath, fatigue,  frailty and an overall sense of loss of control can exacerbate existing symptoms of anxiety, self-loathing, hypervigilance and distrust. Flashbacks, intrusive memories, insomnia and panic attacks can occur or recur. Hospice staff trained in trauma-informed care can help alleviate these symptoms and allow the veteran to experience a calmer, more meaningful and less fearful end of life. 

Chronic Pain

About one-half of veterans who receive care at a VA facility experience chronic pain as a result of musculoskeletal injuries, traumatic brain injuries and/or PTSD. As these individuals approach the end of life, their pain often increases due to physical stressors, the effects of illnesses such as cancer, and psychological issues such as fear, anxiety and depression. Hospice providers who offer veteran-centric care are aware of these issues and work to ease the patient’s suffering using a comprehensive, multidisciplinary approach. 

Depression

According to Pathways, a community partner of We Honor Veterans, 11% of veterans over the age of 65 suffer from major depressive disorder, more than twice the number of non-veterans in the same age group. Untreated depression can lead to feelings of worthlessness, lack of motivation, loss of pleasurable feelings and thoughts of suicide. These feelings can be greatly increased by end-of-life symptoms such as pain, anxiety, fatigue and emotional distress. Hospice providers trained in veteran-centric care assess each patient who enters hospice for symptoms of major depression and work with an interdisciplinary team to provide appropriate psychological care. 

Substance Use Disorder

Substance misuse, including illicit drugs, prescription painkillers and alcohol, is prevalent among veterans in all age groups. Alcohol use disorder is particularly common in older veterans, many of whom have co-occurring mental health issues such as depression and PTSD. This population presents particular challenges to hospice providers as they may be less responsive to analgesic and anxiety-relieving medications due to chronic drug and/or alcohol use. Hospice providers must be sensitive to this reality and use all modalities available to help veterans with SUD achieve a meaningful end of life. 

Of course, these are just a sampling of the issues that may affect military veterans. Even those who do not have a chronic physical or mental illness may carry psychological burdens associated with combat, including feelings of guilt and shame, or fear of retribution in the afterlife for acts committed during war time. As caregivers strive to control physical symptoms related to end of life, another goal of hospice for veterans is to help them tell their stories through compassionate inquiry and honor their life journeys through non-judgmental emotional support.

Sources

“About VA health benefits”. U.S. Department of Veteran’s Affairs. https://www.va.gov/health-care/about-va-health-benefits/

“Mental Health”. U.S. Department of Veteran’s Affairs. https://www.mentalhealth.va.gov/msthome/index.asp 

“What is Trauma-Informed Care?” Trauma-Informed Care Implementation Resource Center. https://www.traumainformedcare.chcs.org/what-is-trauma-informed-care/ 

“Partner Directory.” We Honor Veterans. https://www.wehonorveterans.org/partner-directory/ 

“PTSD and Veterans.” Hill & Ponton. https://www.hillandponton.com/resources/veterans-statistics-ptsd/ 

“PTSD: National Center for PTSD”. U.S. Department of Veteran’s Affairs. https://www.ptsd.va.gov/professional/treat/care/index.asp 

Pathways Home Health and Hospice. https://www.pathwayshealth.org/

Since questions about sexual orientation or gender identity are not routinely asked of patients upon admission to hospice, it is difficult to assess whether LGBTQ+ patients receive similar care to that provided to cisgender or heterosexual patients. Many may not seek palliative or hospice care in a timely manner, or at all, due to fear of discrimination.   

Due to history of family, social, and legal discrimination, this population often suffers health disparities, particularly as they age. LGBTQ+ older adults are less likely to have children, may be estranged from family, and are more likely to live alone. This lack of support can often influence medical decision making.

Lack of mainstream diverse and inclusive health care can additionally cause unique challenges for LGBTQ+ patients seeking medical care. According to the World Health Organization, LGBTIQ+ patients experience a higher likelihood of adverse physical or mental health outcomes, human rights violations and discrimination. These factors may cause delays in seeking necessary medical interventions that put this population at higher risk of premature death.

Finding an LGBTQ+ inclusive hospice provider

Aside from asking those you know and trust for recommendations, there are few options readily available to assist your search for LGBTQ+ life affirming health services for you or a loved one. The book, LGBTQ-Inclusive Hospice and Palliative Care: A Practical Guide to Transforming Professional Practice provides organizations with tips to assess their company’s inclusivity. It suggests criteria that may be helpful in locating an LGBTQ+-friendly palliative or hospice provider in your area. Some things to look for when seeking an inclusive provider include:

• Its nondiscrimination policy and statement includes language such as gender identity, gender expression or sexual orientation and is easily located on its website and in its written marketing materials.
• Its website and brochure include at least one same-gender dyad photo
• The company has placed a paid advertisement in a print or online LGBTQ+ publication
• The provider has offered at least one LGBTQ+-specific bereavement group in the past year.

Additionally, you can reach out to one or more resources and LGBTQ+ advocacy organizations for referrals or assistance. These include:

SAGE – National Resource Center on LGBTQ+ Aging – advocacy services for LGBTQ+ elders (See its 10 Tips for Finding LGBT-Affirming Services for specific ideas.)

PFLAG – (parents, family, friends and loved ones of lesbians and gays) – the largest organization supporting, educating, advocating for LGBTQ+ people and those who love them

National LGBT Cancer Network – educating, training, and advocating to improve the lives of LGBT cancer survivors and those at risk

Summary

The number of people who identify as LGBTQ+ in America is growing, and many of them are aging. By 2030, the number of LGBTQ+ people over the age of 50 in the U.S. is expected to grow to around 7 million. More than 67% will need elder care and services, according to SAGE. As this need for care grows, so too does the need for healthcare that supports inclusion.

The Older Americans Act, which funds the U.S. Administration on Aging and Area Agencies on Aging does not explicitly include LGBTQ+ people as a population of greatest social need. While state and local agencies are encouraged to provide cultural competency training, limited funding may not support consistent or tailored programs aimed at better assisting this population. If interested, learn about ways to advocate and educate policy makers on LGBTQ+ aging issues.

Sources

“Cisgender”. Merriam-Webster. https://www.merriam-webster.com/dictionary/cisgender 

“Improving LGBTIQ+ health and well-being with consideration for SOGIESC”. World Health Organization. https://www.who.int/activities/improving-lgbtqi-health-and-well–being-with-consideration-for-sogiesc 

“10 Tips for Finding LGBTQ+-Affirming Services”. SAGE USA. https://www.sageusa.org/about-us/ 

“Find a Local Chapter”. PFLAG. https://pflag.org/findachapter/ 

“State Organizations”. SAGE USA. https://lgbtagingcenter.org/state-organizations/ 

“Programs and Resouces”. National LGBT Cancer Network. https://cancer-network.org/ 

“Older Americans Act”. Administration for Community Living. https://acl.gov/about-acl/authorizing-statutes/older-americans-act 

“Understanding Issues Facing Older LGBT Adults”. Movement Advancement Project. https://www.lgbtmap.org/file/understanding-issues-facing-lgbt-older-adults.pdf 

While hospices provide similar standards of care for patients, most providers offer specialized care or programs to better serve the needs of diverse populations. Military service, sexual orientation, ethnicity, gender, race, religion, or cultural beliefs can influence how care is given, as well as how it is perceived by the patient and their family. Thus the need for hospice providers to recognize and remain sensitive to the needs of diverse patient populations is very real. This is especially true today, when the U.S. population is becoming more ethnically and racially diverse; more people identify as LBGTQ and non-binary, and people with both physical and developmental disabilities are living longer lives. 

Specifically, cultural, racial, or ethnic beliefs can influence patient care preferences or treatment goals in many ways. The American Psychological Association offers the following examples:

• Preference for less or more aggressive treatments
• How pain should be managed (or not)
• Whether family should be involved in primary decision making
• Beliefs about life saving measures (resuscitation, feeding tube, intubation)
• Attitudes toward advance planning
• Views on death and dying
• Differing opinions on what constitutes quality of life

What’s more, members of certain ethnic minorities, particularly Blacks and Latino individuals, often have a deeply ingrained and well-founded distrust of the medical system, which can negatively impact their ability to accept hospice or palliative care. 

Ensuring Culturally Sensitive Care

Throughout the U.S. healthcare system, implicit and explicit bias and discrimination has historically had a negative effect on the healthcare outcomes of racial, ethnic and cultural minorities, including at the end of life. And while efforts have been made to address these inequities, culturally sensitive educational programs for doctors, nurses and ancillary care providers are not widespread. Further, racial minorities remain underrepresented in the healthcare workforce today. 

Still, some hospice providers are making efforts to be more inclusive and incorporating training for their employees in how to provide care within a cultural framework while remaining aware of the fact that every patient is an individual with deeply held values, goals, preferences and needs. As noted in the publication Diversity and Discrimination in Healthcare by Brandon M. Togioka et al., focusing on “typical” characteristics of minority groups can reinforce the incorrect assumption that the impact of culture on a person’s beliefs and values is “fixed.” Instead, the authors suggest that healthcare providers realize that a patient’s views are influenced by culture, race, ethnicity, gender identity and individual life experiences but are determined by many other factors that can only be elicited by getting to know the”person behind the patient” and meeting that person’s needs. 

Sources

“1.2 million LGBTQ adults in the US identify as nonbinary”. UCLA School of Law: Williams Institute. https://williamsinstitute.law.ucla.edu/press/lgbtq-nonbinary-press-release/ 

“Culturally Diverse Communities and Palliative and End-of-Life Care”. American Psychological Association. https://www.apa.org/pi/aging/programs/eol/end-of-life-diversity 

“Understanding and Ameliorating Medical Mistrust Among Black Americans”. The Commonwealth Fund. https://www.commonwealthfund.org/publications/newsletter-article/2021/jan/medical-mistrust-among-black-americans 

“Diversity and Discrimination in Health Care”. StatPearls. https://www.ncbi.nlm.nih.gov/books/NBK568721/