Patient Stories

Engaging Hospice Early Enables Patient to Fulfill Wish to Die at Home

As an oncologist and researcher at the Dana-Farber Cancer Institute for more than 30 years, Barrett Rollins, M.D., counseled hundreds of patients about end-of-life issues and had long known the benefits of hospice, but it wasn’t until he worked with Care Dimensions to care for his wife Jane during her final months that he fully understood the depth of clinical expertise and partnership the hospice team brings to patients and families.

His wife, Jane Weeks, M.D., was also an oncologist and researcher who worked side-by-side with her husband at Dana-Farber. Keenly interested in end-of-life issues, Jane had spent the last ten years developing a new field in oncology to measure the outcomes of cancer treatment in conjunction with a patient’s quality of life. "She was exploring how we think about providing cancer care and support for patients with terminal diagnoses, and how we support them thought the last stage of their lives," explained Dr. Rollins.

In September 2012, Jane suffered a pulmonary embolus or blood clot that traveled from her leg to her lung causing a cardio-pulmonary arrest. During her treatment, doctors found that the blood clot was caused by widespread breast cancer. Jane sought treatment for the cancer, but after seven months, it became clear that she would not survive and she started experiencing more acute symptoms, including difficulty breathing.

"From the beginning, we talked about not ‘if’ but ‘when’ we would bring hospice into her care," said Dr. Rollins. "We thought hospice would be beneficial, but I really think it was one of the smartest decisions we made about her care."

To control Jane’s breathing difficulties and discomfort required the clinical expertise of Care Dimensions Chief Medical Officer Stephanie Patel, M.D., and the nurses on Jane’s team to find the proper dosing and administration of narcotics to help her breathing. "It was an ongoing and difficult process, but we trusted them, because this is their area of expertise and they really knew what they were doing," he explained.

"The 24-hour nursing support line was very comforting and effective. If Jane was having trouble breathing and I couldn’t control it with the pump, I could call and have a nurse walk me through it or they’d come out and visit," said Dr. Rollins. "Jane desperately wanted to die at home. If it wasn’t for our hospice team and knowing that we could contact them continuously, get support, modify infusion pumps and change medications, she would have been hospitalized."

Sometimes, symptom relief came on four legs. "One of the wonderful discoveries we made about hospice was that Patrick the golden retriever was available for pet therapy visits," Dr. Rollins explained. "Patrick’s visits brought such joy and relief. He’d come over and play with Jane, and for a while, we were more concerned if Patrick had enough water on hot days, rather than how Jane was breathing."

After four months on hospice care, Jane died peacefully at home at the age of 61.

After such a personal experience with hospice, Dr. Rollins has become an even bigger advocate for beginning hospice care earlier in a patient’s course of treatment. "Jane and I had the ability to think and talk about hospice for several months, so we could decide to start it at the right time. The lesson for families is that they need to understand fairly early on in their loved one’s disease course whether they’re dealing with a curable disease – which was one of Jane’s research areas. They need to understand what’s curable and what’s not, so they can begin the conversation about hospice early."

"You don’t need to engage hospice at that point, but the earlier that you talk about it will make it less traumatic to make the decision at the right time," he stressed. "I cannot say enough about the importance of hospice and Care Dimensions in Jane being able to have a comfortable end."