Most hospice rooms will have do not disturb signs which can be hung on the door handle to indicate that you don’t want people to come in. Who are these signs for? Are they there for the patient or the clinicians? We hang the do not disturb sign on when we see patients as we do not want our clinical assessment to be disturbed and to maintain the patient’s privacy. We put the sign up if a patient is in the bathroom washing, or if a procedure such as a dressing change is being undertaken. Are patients encouraged to use the do not disturb sign for their purposes?

She wasn’t used to seeing so many people at once. She requested for us not to bring our entire team in. She was shy by nature and wanted to talk about some private matters. She asked if it would be okay for her and her husband to have a chance to just be together alone. Healthcare institutions are not easy places to share intimate times. We talked about creating a time-out sign. Something that she could put on the door when she wanted some time out from everyone else. Or if she wanted some alone time with her husband where they could do whatever they wanted without worrying about people barging in, unannounced.

Before her illness, their relationship had been difficult. The main issues were dose-related, the more alcohol her husband drank the more they fought. A legal drug that is available almost anywhere without a prescription. Responsible for a lot of suffering throughout the world but acceptable in most societies of the world. Alcohol had caused a lot of distress in their relationship. One of the only good things about being diagnosed with a terminal illness was that he had stopped drinking. Though she had been sicker than ever the last months had been some of the best of their time together.

She felt safe in our inpatient unit. She felt like she could be herself. She could be alone with her husband, away from the rest of the family. Everyone else didn’t always understand. They were always offering her unsolicited advice, telling her what to do, with what she had been told would be a short rest of her life. They kept telling her to pray more. She had done plenty of that over the past weeks, but it hadn’t worked. The god she had been raised to worship had not responded to her family’s prayer for a miracle cure. Her faith had shattered into a thousand angry pieces of grief-stained glass. Sometimes it felt like a miracle just to not be in pain for a few hours. There had been too much pain, especially during her stay in hospital. That’s where they kept on breaking bad news to her. Just when she thought things couldn’t get worse, they did. Over and over and over again. She had been scared of the unknown that hospice was before her transfer over.

She wanted to feel special. She wanted to get dressed up. To have her hair and make-up done. She asked if a date night could be arranged for her. Just her and her husband, having a romantic dinner, maybe in a restaurant. Things continued to change, she was getting worse. She became too unwell to leave the hospice, let alone go out for a meal. We decided to bring the restaurant experience into the hospice. The small lounge next door to her room was converted into a dining space. Tastefully decorated it had been transformed into a private dining space. There was enough room that if she couldn’t walk into the room, she could be wheeled in via a chair. We were unsure if she could make it for their special night, as the pace of her deterioration had increased. Somehow she held on. She had a memorable and happy time with her man.

She told our staff that despite being a hospice inpatient, she had found the last weeks spent with us to be some of the best of her entire marriage. The next day she lost consciousness.

We kept her comfortable, and she died days later with her husband at her side.