Dr. Guy Hauray, a doctor in cognitive psychology, led a full professional life shared between coaching businessmen, leading personal development groups, and teaching Neuro-Coaching™. As part of his studies in social anthropology, he focused on identity, and spiritual and existential search processes. His unusual path led him to develop an original method designed to remediate the processes of stress. This modern shaman helped guide others to empowerment and autonomy by tapping into their personal resources.
In 2017, his wife, Danielle Proulx, noticed that he was less energetic than usual and had a persistent cough. She encouraged him to see a doctor, where he received a diagnosis of nonhodgkins lymphoma. He started chemotherapy and radiotherapy for metastasis in his abdomen and groin of left leg. After the two first chemo protocols failed, he agreed to participate in a third immunotherapy treatment in December 2019. However, when he was unable to maneuver in the bathtub because he was lacking strength, his wife called 911. After a stay in the hospital, his oncologist informed him that treatments were no longer effective and the cancer was still progressing. In spite of the loss of his motor abilities after the new treatment, he retained his good spirit and agreed to be referred for radiotherapy services and palliative care at home.
In March 2020, the pandemic disrupted the hospital care plans and his wife could not accompany him for treatments. This played a part in the deterioration of his health. After a period of respite at home, his health improved and he underwent a fourth round of chemotherapy. The nurse at the CLSC offered home care but he refused, preferring to be autonomous as long as possible. He relied on his wife Danielle to support him physically when needed. At the end of July, when his oncologist announced a poor prognosis, he decided to stop treatment. Danielle was surprised to hear him say, “It is okay; I don’t have to fight anymore.” What he feared most was physical pain. His doctor prescribed pain medications and the CLSC nurse helped him managing the symptoms.
The CLSC social worker met the couple at home to discuss the care they hoped for. Dr. Hauray wished to die at home and his wife agreed. Living in common law for 15 years and having been business partners as well, they decided to stop work and to spend this time together. At this point, the couple decided that they did not need the services of the CLSC healthcare attendant. Dr. Hauray refused the walker at the time and even the electric bed offered by the occupational therapist (OT).
A week later, Dr. Hauray fell and needed the help of paramedics to get back into bed. He refused to be hospitalized, but that evening Danielle called a special line to get help to manage her husband’s new pain and delirium. A doctor prescribed medication to help control the anxiety and reminded her that he was in palliative care. Afraid that her husband would fall again, she took the time needed to calm him and to convince him to stay in bed.
The following morning, the nurse installed butterfly lines to facilitate the administration of medication. The CLSC staff taught Danielle how to care for him and the social worker prepared her emotionally for the death to come. Meanwhile, the OT made arrangements to deliver the equipment needed, including a hospital bed. Danielle took the furniture out of his room to make room for the new bed and made sure to personalize it for his comfort.
The attendants helped Danielle plan and deliver hygiene care for her husband. Danielle could no longer change his diapers or move him by herself. He declined more and more and she had to cope with all these changes. As her husband developed problems swallowing, she gave him little sips of liquid. One evening, she gave him a little of beer and tomato juice and that made him smile. She adapted the care according to his preferences.
Nurses from Mount Sinai Hospital Center and NOVA helped out. The attendants from the CLSC and NOVA ensured that he was comfortable mornings and evenings. All the teams accompanied Dr. Hauray and his wife by listening and providing educational material.
Services were not always perfect. The attendants from the agencies were not always well informed nor well trained. Danielle oversaw the care and gave feedback to the CLSC team. It was important for her that her husband be treated with gentle care and a calm voice. When the attendants were stressed, her husband could feel it.
Following his death, his wife called a nurse from the team to come and confirm the death. The latter expressed her sympathies and took care of everything: filling the papers, and calling the funeral home. The nurse was calm. The members of different teams then called Danielle to offer their condolences.
The social worker came to visit her and helped her with the administrative documents. Danielle mentioned that her husband waited to leave until she was ready. In spite of some difficulties, Danielle believes she would be a caregiver at home again if she had to.
Danielle made some suggestions for caregivers at home. After the death, the staff need to ask families about their preferred rites. In her case, an attendant covered the face of her husband with a blanket and Danielle was not ready for this image. Danielle encourages families to take the time they need to be with the patient, especially to open their hearts in moments of silence. For a few hours after the death of her husband, she wanted to be alone. She did not want witnesses. Danielle just wanted to let go of her schedule and any “pseudo-priorities”, everything. Danielle believes that the early acceptance of homecare services makes the adaptation period easier for caregivers and enables the service workers to better meet the needs of the family and to adapt to the environment and atmosphere of a particular home.
The experience with palliative care at home
For Dr. Hauray’s wife, the experience of palliative care was enriching on many levels. She could talk freely to her husband in the intimacy of their home, without being interrupted. They were able to live the last moments together calmly and with respect and dignity. In the past, her final goodbyes to other people had been said in a hospital setting. Danielle found that the security and warmth of their marital home helped her to accompany her spouse in the last stage of his life. Home provides a sense of freedom and the opportunity to express emotions with authenticity and transparency. It helps as well for people to share last minute confidences. Danielle was still feeling his presence at home and that reassured her. Danielle’s biggest reward? Having accompanied him until the end. She had promised not to take her husband to the hospital. He cried and was afraid to be alone in a hospital room. His doctor had suggested admitting him to the hospital, but Danielle refused. The teamwork and constant communication allowed a death at home, which took into consideration both the needs of the person at the end of life and those of the caregiver.