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.
- 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.
- 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.”
- 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.
- 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?