Coping with Serious Illness
Coping with Serious Illness
The diagnosis of a life-limiting illness is a difficult time for families. Whether the loved one is a family member, close friend, direct support staff, or pet, a serious illness can cause distress, confusion, and worry. While various professionals will have different roles, everyone involved with an autistic adult experiencing the serious illness of a loved one should communicate clearly about the illness and explain any changes that may occur as a result. The prognosis should be shared clearly and honestly, and information should be given regarding treatment and care. Honest communication may help alleviate anxiety about the unknown and likely disruptions to routines. It can also help the person with autism begin to think about how things may change in the future and to prepare a plan for coping.
Recommendations for Providing Support
- Keep the individual informed throughout the course of the illness, providing updates as they are available. Examples of sharing information over time include:
- “Your mom hasn’t been feeling well. She is going to the doctor to see if she can get some help.”
- “Your dad’s doctor is trying a new medication/treatment, but we don’t know yet if it will help.”
- “The new medication doesn’t seem to be helping. Your grandmother is going to die, but we don’t know when. We are going to try to make sure she is very comfortable, doesn’t feel sick, or feel any pain.”
- “Your grandfather won’t be alive much longer. Other family members are sharing with him how much they love him. Would you like to visit/call/write to him?” (This can and should be offered at multiple points.)
- If it is appropriate and possible, provide numerous opportunities to connect with the dying person. This could involve preparing for the interactions, such as practicing what to say.
- Allow the autistic individual to set their own boundaries. Don’t pressure them to see the dying person if they express discomfort. Do offer alternatives for “leave taking,” such as sending a message, writing a letter, or drawing a picture.
- Reach out to others in any support network the individual may have to let them know that this is a good time to check in.
- Invite conversations with anyone in their support network to help the person understand what could or likely will happen when their loved one dies.
- Use clear and honest language. Avoid euphemisms when discussing the illness, treatment options, and prognosis.
- Provide ample time and space to address any questions.
Hospice and Palliative Care
More than half of all deaths in the U.S. occur in hospice care. Nonetheless, many adults are uninformed or have misconceptions about the role of hospice, differences between hospice and palliative care, and differences between treatment and supportive care. Helping an autistic adult understand the goals of hospice and/or palliative care may ease their concerns.
Hospice Care
Hospice is an approach, not a place; most hospice care is delivered where the person lives, whether in a private home, in a nursing home, or in another residence. Eligibility for hospice requires a doctor’s certification that the patient has a life expectancy of six months or less—although of course this expectation is difficult to determine and some hospice patients live longer than six months. Hospice care is provided by a team of professionals including a nurse, a social worker, a chaplain, and others. The goals of hospice care are to manage pain and other symptoms, and to improve quality of life. Treatments aimed at curing the primary diagnosis discontinue when the patient or healthcare surrogate elects hospice care.
Hospice does not imply “giving up on” the person. Hospice care means that there is no curative option available or that the patient has elected to discontinue treatment—typically due to debilitating side effects of treatment that has failed to alter the disease progression significantly. Hospice is about comfort rather than cure.
Hospice professionals treating a patient with an autistic adult in the home should recognize potential stressors that the idea of hospice, as well as the presence of the hospice team, may bring. Additional equipment and multiple new people entering the home at strange intervals all can create distress for a person on the spectrum and may exacerbate the anticipatory grief that person may already experience. These potential stressors could be alleviated somewhat by including the person with autism in conversations about expectations and care plans, and by asking directly about their specific needs during this strange and confusing time. Because hospice care at home allows the dying loved one to remain present with their family, their continued physical presence may be helpful and comforting to adults with autism. Being able to assist in caregiving may also provide a sense of purpose and control during an otherwise uncertain time. Hospice professionals should maintain boundaries yet also be aware of any available support system of family, friends, or others who could provide critical help in supporting the person during their grief journey.
Palliative Care
Palliative care differs from hospice care in that it provides supportive care for anyone who is experiencing suffering or is in pain, but it is not restricted to those who are terminally ill. Palliative care can be provided along with curative treatment for the underlying condition in the home, at an outpatient clinic, or in the hospital.
Case Studies – Serious Illness
Charley, 21, who uses they/them pronouns, is very close to their grandfather. The grandfather has lost significant weight and attends frequent doctor appointments. Charley asked the family to tell them what is going on, and even asked the grandfather, but no one has honestly shared what is happening.
Finally the oncologist offered to meet with Charley during the grandfather’s next visit to explain more about the type of cancer he had and the treatment options being pursued. Charley was encouraged to bring a phone to the visit to record the conversation, so that they could listen to it again later and more fully process the information. After that visit Charley found that although the situation was still upsetting, the information given helped them be more supportive rather than anxious or suspicious each time the grandfather left the house or received a phone call.
Reflection Questions
- How might Charley’s grief experience have changed if they had not been told of the illness?
- How might you, as a professional in this case, support Charley’s relationship with their grandfather at the end of his life?
- In what other ways can professionals interact honestly with grieving autistic adults, and honor their need for trustworthiness?
Roger is 80 years old and has congestive heart failure. Roger is cognitively impaired and lives with his autistic wife, Rhonda, who is 77. The couple rely on Rhonda’s brother Henry to take them to appointments and to help explain information from the doctor. At home, Roger’s breathing is aided by an oxygen tank and cannula, and he also has a wheelchair. His health has declined considerably in the past few months and he finds it increasingly difficult to catch his breath, even with the help of the oxygen. The doctor has made the determination that Roger would benefit from hospice care and asks Roger about his end-of-life care preferences. Roger wants to avoid the conversation, but Rhonda shares that she would like Roger to know his care options and discuss his medical treatment preferences should he become unable to make his own decisions. Roger develops his own plan, known as an advance directive, with Henry and a hospital social worker’s help. Henry and the hospice social worker come to Roger and Rhonda’s home and explain that hospice teams support not only the patient but also the family. The couple is eligible to receive help at home from a registered nurse, a nursing assistant, a chaplain, and also from a volunteer who can stay with Roger for an hour or two to give Rhonda and Henry a break from caregiving. While this information is scary for Rhonda because she’s uneasy having people she doesn’t know come into the house, Roger is happy to hear that Rhonda and Henry will be supported.
Reflection Questions
- Without Roger completing his advance care plan, how might Rhonda have experienced the end of Roger’s life?
- What does the hospice care team need to know about Rhonda?
- How can the hospice team work to make the family’s experience the best that it can be?
- What kind of rituals might be helpful for Rhonda and Roger as they approach the end of Roger’s life?
Francine is a 68-year-old woman who has worked in environmental services at the local hospital her entire adult life. She loves the routine of cleaning up the same places in the same order each day and has come to see her work colleagues as a kind of extended family. Recently, a new man named Bill began working as the head of human resources, and he gently encouraged Francine to start to think about retirement. Francine was devastated and felt panicky at the idea of losing her work family but did not share this. “Okay,” she said calmly. “I’ll retire then.”
Reflection Questions
- How could Francine’s retirement have been handled differently?
- If you were counseling Francine, how would you approach her anticipatory grief?
- If Francine is having difficulty naming her feelings, what is another modality you might use to help her process this loss?
Melissa is a 40-year-old autistic woman with epilepsy. Her service dog, Luna, has been trained to detect her seizures before they happen, and Melissa naturally has grown quite close to Luna over the years. One day Melissa finds a small lump on Luna’s ribcage and takes her to the vet right away. The veterinarian completes extensive testing and delivers the worst possible news: Luna has advanced cancer and is experiencing a great deal of pain. He strongly recommends euthanasia to avoid further suffering. Melissa screams and begin to hyperventilate in his office. She frantically calls her mother to come and be with her; when her mother arrives, she finds Melissa alone in an exam room holding Luna’s leash, rocking, and sobbing.
Reflection Questions
- How might Melissa have been better supported through this event?
- What can Melissa and her mother do to memorialize Luna?
- How might the intensity of Melissa’s grief be worked through?