Older Patients, Wiser Care

He Was Terminally Ill -- but Not Yet Eligible for Hospice

Last updated: Jul 05, 2010

The case: Advanced cancer, treatable but not curable

At 82, Mr. Z had certainly beaten the odds. Despite smoking for 50 years, having dangerous aneurysms in his aorta, and being hospitalized several times over the past three years for angina and congestive heart failure, he'd managed to recover his function after every urgent medical crisis. His mind was pretty sharp, and he could walk steadily.

Still, he knew that his overall health was precarious. He'd mentioned repeatedly over the years that he wanted to avoid surgery and other major procedures, since he knew that they're especially risky in older people with bad hearts like his "“ a goal I generally supported him in. But that changed when he was admitted to the hospital with anemia and bad abdominal pain.

He agreed to a CAT scan when we told him it would help us address his pain. It showed a large mass blocking part of his colon. Without surgery to remove what was probably colon cancer, he'd surely continue to have devastating attacks of belly pain.

Although his risk of dying during the operation was relatively high (our best guess was a one in five chance of not making it), leaving that mass in his belly would almost certainly leave him facing a difficult and painful death over the next weeks to months. So he eventually agreed to surgery.

It went well. The surgeons removed a colon cancer, as well as several nearby lymph nodes. Mr. Z made a good recovery over the next several weeks in a rehabilitation facility. But his follow-up tests confirmed that the cancer remained in his body. The oncologists diagnosed him with incurable Stage IV colon cancer.

"The cancer doctor told me that it's possible to get chemotherapy, but that there's only a 1 in 20 chance that it would help me live longer, whereas it will definitely make me feel sicker in the short term," he said. He didn't want this.

"So if I don't get treated," he went on, "then what do I do?"

The challenge: A terminal condition, but not eligible for hospice

Even in the face of terminal illnesses, most people generally feel better if "something" is being done. After all, modern medicine is very good at doing things. So this is what both doctors and patients are used to. Even for those who choose to enroll in hospice, "something" is being done: the hospice team usually devotes a lot of time and energy to managing symptoms, providing counseling, and otherwise helping the ill person prepare for the end of life.

Unfortunately Mr. Z wasn't yet eligible for hospice services. His colon cancer, though it had started to spread through his body, wasn't yet making him feel very weak or sick. After the surgery, the pain had abated. Despite electing against chemotherapy or other treatment, no doctor at this point would feel confident saying Mr. Z had six months or less to live (the qualifier point for hospice). Mr. Z, however, dreaded "waiting alone in limbo until I start getting worse."

The solution: Advanced Illness Management (AIM) programs

Fortunately, hospice is no longer the only way for people to get coordinated, person-centered services in the face of serious illness.

Instead, our social workers found him an Advanced Illness Management (AIM) program. These programs, which are becoming more widely available throughout the country, were created to help seriously ill patients who aren't eligible for hospice or who otherwise prefer not to enroll in hospice. AIM programs particularly focus on customized social support, case management, and some nursing services, mostly home-based and done in coordination with a patient's usual medical team. Many AIM programs are linked with cancer centers, but others are designed to help those struggling to cope with other advanced illnesses, such as Stage IV COPD, Parkinson's, or bad heart failure.

"So how is that different from hospice?" Mr. Z wanted to know.

I explained to him that the two services have quite a lot in common. However, AIM doesn't require a six-month prognosis. Also, if Mr. Z were to decide he did want to give chemotherapy a try, that would be possible while enrolled in AIM but much harder to arrange if he were in hospice.

Mr. Z was a little hesitant to sign up. He wasn't sure he wanted someone to come to his house. But we both knew that the next several months would be emotionally challenging "“ and he agreed to give this unique form of support a try.

My prescription for caregivers:

  • If your loved one is facing a serious, incurable illness, ask your doctor or the hospital's social worker or patient advocate if any Advanced Illness Management (AIM) programs are available in your area. They are also sometimes called Advanced Illness Coordinated Care programs.

  • Know that AIM programs (and other outpatient palliative care services) can help address the emotional, spiritual, and practical late-life planning needs that are part of every advanced illness experience. AIM programs can also help provide better pain and symptom management.

  • Understand that AIM programs share a lot in common with hospice services, but aren't the same thing. In particular, you don't need a six-month prognosis to enroll in an AIM program, and you can usually continue active medical treatments for a late-stage illness.