As we discussed last week, our sister Colleen's decision to continue certain treatments meant she was not yet a hospice candidate and made it difficult to determine when she could start hospice. This eventually led to a great deal of stress, uncertainty, and frustration. For us, the stress mounted as her symptoms worsened with time, and meanwhile she continued to take her chemotherapy drug. We felt helpless and anxious because we knew that if something acutely happened, she would not want us to call 911 or summon an ambulance. She expressed to each of us on many occasions that she did want to go back to a hospital, ever, and she would not want life-sustaining interventions. Yet she was not officially a hospice patient, so we would not be able to obtain their guidance and support in a crisis, either.
Why was this burden to determine the “right time” to enroll in hospice left up to us family members? As this study points out, doctors are supposed to talk about hospice with patients who are expected to live less than a year, but overall only 25% would discuss hospice with a patient who only had 4 to 6 months to live. Some doctors admit that they would wait for the family to bring up the topic of hospice.
In our case, the conversation about hospice was brought up once initially at the point that Colleen was told there was no further treatment options. It was never again mentioned by her primary medical team after she decided to continue to take medication. But, obviously, things were going to change in the weeks ahead and the end-of-life and hospice conversations needed to keep happening. We wasted weeks trying to figure out how to have these conversations. We are not implying that we were looking forward to the end, but we painfully watched her condition change drastically, knowing that we wanted the appropriate steps in place as she was dying. This led to mounting stress as we knew the end was coming whether we wanted it to or not, and yet we felt increasingly unprepared. We had whispered debates out of her earshot about how and when to bring "it" (hospice enrollment) up. We were afraid that she would feel we were pressuring her to give up… to hurry up and die.
We believe that initiating the conversation about whether it was time to enroll in hospice would have been best done by her physicians. Colleen was strong willed and felt she knew best - and almost always she did - but she would have listened to an outsider more readily. Of course, discussing dying is hard and we all struggle with it, but it is much harder for the family to do it with their loved one than for a doctor with their patient. The medical team seems to be in the best position to get it done effectively and in a timely manner. They also (hopefully) have the appropriate information about what palliative care provides and what services hospice can offer, so that they can make the case to the patient and their family that enrolling in hospice is not “giving up” or hastening death, but putting a unique type of team in place to support the patient and their family during the inevitable.
We understand barriers to enrolling in hospice and have read several articles about this: physicians wanting to provide hope, treatment preventing hospice enrollment, patient perspectives, denial and unrealistic expectations for a miracle. We experienced each of these barriers to some degree, but we wanted the support from hospice and feel that we would have benefited greatly had we enrolled sooner. We agree with the mission of palliative care and all that hospice can offer: according to the National Hospice and Palliative Care Organization, that “each of us has the right to die pain-free and with dignity, and that our families will receive the necessary support to allow us to do so.” Unfortunately, we could not figure out how to overcome some of the barriers. We wanted hospice support but missed an opportunity to get it when we needed it. It is a common problem that people are unable to have the necessary conversations sooner. Although we felt that we talked realistically and planned ahead, we were frustrated to nonetheless be among those struggling with the appropriate way to enter and navigate the end-of-life stage.
Family members report dissatisfaction with their hospice experience when they are referred to hospice too late, as reported in this response letter, Family Assessment of Quality of Care in the Last Month of Life. Early access to palliative care services is one of the main goals to improve the quality of care perceived by the family, but achieving that goal will require changes in resources and culture. We personally agree with this research - without hospice or other formal palliative care coordination, we had lower confidence in caring for Colleen, unmet needs, and more concerns about coordination of care. We were present and caring for Colleen in her final 72 hours of life without any representative from hospice helping us. We luckily had a binder of information that hospice provided, which explained the stages and symptoms of dying, and that we referenced often. We wanted to be together privately as a family and are not suggesting that we wanted a hospice member watching over us, but we would have felt more at ease had we been educated and prepared by the hospice team and perhaps had received at least one in-person visit.
To have received the proper training we wanted, it likely would have required more time enrolled in hospice. Sadly, our story is not unique and many patients (35%) are enrolled in hospice less than 7 days, and many more for less than 30 days (62%), according to data from the Medicare and Medicaid services. As we stated in our response letter to the study by Drs. Teno and Plotzke in JAMA Internal Medicine, we are encouraged that Medicare and Medicaid plan to change payment policies to encourage more hospice visits and look forward to further palliative care and hospice improvements. There is much more work to do to improve end of life care. As Drs. Talebreza and Widera stated in reply to our letter, “In hospice care, simply showing up is not enough, and we only have 1 opportunity to get it right.”