07/12/2013 01:30 pm ET Updated Sep 11, 2013

View From the Field: When Chronic Conditions Become Terminal

Throughout his 70s, Richard Singh visited local markets in his Bronx neighborhood, held hands with his wife on their outings, and got down on the floor to play racecars with his 4-year-old grandson. He was the active, reliable center of his multi-generational family household, despite taking 15 medications for congestive heart failure, diabetes, hypertension and high cholesterol.

Last winter, his family and care team started to notice small but telling signs that the family patriarch's health was declining. He would eat a couple bites of breakfast and doze off at the table. His hand shook when he administered his insulin. The grandson asked his mother, Mr. Singh's daughter, why Grandpa no longer played with him. "That was the moment his daughter knew," reports Mr. Singh's longtime nurse Georgina Cyrillian. "I knew when I went to pay a visit and he was not outside to greet me, as he usually was."

Increasingly, the 17 steps to his second-floor apartment were harder to manage, and he stayed inside. He was tired all the time, lost his appetite, had trouble breathing and, after many years with no hospital visits, began cycling in and out of the emergency room and in-patient care. When he was home, his wife stayed up nights with her ear to his nose, to make sure he was breathing.

While Mr. Singh had lived for more than seven years with multiple chronic conditions, he was now transitioning to another stage of illness -- and another stage of care. His conditions were becoming terminal, and his family gradually realized they had to make a shift, as well, to end-of-life care. "They knew that he was very sick, but they were still afraid of saying it," says Georgina. "They were waiting for someone to bring it up."

That someone was Georgina. She began by going over the hospital discharge papers and doctor's diagnosis with the family, and, over the course of a three-hour home visit, she was able to prepare him for the next stage of life and the family for the next stage of caregiving.

The Singh family is hardly alone. Almost half of American adults live with at least one chronic illness, according to the Centers for Disease Control and Prevention, and chronic diseases are also the leading cause of death in the U.S., accounting for 7 out of 10 deaths.

The signs Mr. Singh's family noticed are common cues that once-manageable chronic diseases may be transitioning to end-stage, terminal conditions. Although every patient is different and every illness runs its own course, common signs include:

Overall frailty, often the first change that a visiting family member, friend or health care worker will notice about the person.

Extreme fatigue. All activity, including waking, is done with a great deal of effort. An emotional weariness may set in, as well. "They may just become sick and tired of swallowing all those medications, tired of doing all those blood glucose levels, tired of having to go all those specialists -- while they know they are not getting any better," says Kathleen Olsen, a clinical director at VNSNY Hospice and Palliative Care.

Lack of appetite. While caregivers may have worked tirelessly for years to get the patient to eat, the body is now shutting down and in fact needs less nutrition.

Frequent hospital visits, even from patients who have managed their chronic symptoms well in the past.

Increased vulnerability, including getting sick or falling more often, and taking longer to recover.

Diminished interest in most activity, including activities of daily living, current events and news, and once pleasurable pastimes.

Disease-specific symptoms will intensify. For patients with chronic obstructive pulmonary disease (COPD), for instance, "they feel very uncomfortable in an environment with no open window," says Renata Gelman, a clinical care manager with Partners in Care, which is affiliated with VNSNY. The care team should see that fresh air, air-conditioning or a fan is always available. In the end, COPD patients will likely be on oxygen.

Helping Caregivers Cope
Once confident in their caregiving abilities, Mr. Singh's wife and daughter doubted their every move, calling Georgina with routine concerns that they had once easily addressed themselves, such as questions about his insulin or emergency phone numbers that were posted prominently on the refrigerator. This is very common. End-of-life care can be frightening and confusing. Georgina and a diverse team of end-of-life caregivers helped the Singh family adjust their expectations, identify goals of care, and better manage the daily tasks of living and caregiving in the final days. To help with the transition to another level of care, think about the following:

Introduce palliative care, which is designed to manage pain and other symptoms associated with end stage conditions, including sleeplessness, anxiety and shortness of breath. Palliative care will increase quality of life and, according to recent studies, can also help terminally ill patients live longer.

Put the appropriate care team in place. Hospice teams are trained experts who provide medical, emotional, social and spiritual care for patients nearing end-of-life and for their families. This discrete, interconnected team will intervent to relieve the patient's symptoms and enhance the ability to enjoy the comforts of home and family. "It's about having the right people in the right place at the right time," says Georgina.

Revisit medications. Have a conversation with the doctor about medications, which are typically curtailed. Mr. Singh's doctors, for example, eliminated his cholesterol medication and reduced his blood pressure medications, as the care shifted from curative to palliative.

Discuss or revisit end-of-life wishes and take necessary steps to put the plan into action. This includes designating a health care proxy and putting that, and other important decisions such as Do Not Resuscitate (DNR) Order, into writing. If there is no signed DNR, a medical team is required by law to attempt resuscitation. If the patient wants to die at home, make that wish clear to the health care team.

Take care of yourself. This includes acknowledging your feelings of anger, confusion and grief, and talking about them with other family members or the care team. "You cannot be a support to your loved one if you don't take care of yourself," says Georgina. The hospice team, especially the social workers, puts special focus on supporting you as a caregiver.

When Mr. Singh died in March, three generations of family members missed him terribly, but they knew they had done all they could to make sure that he died as he had lived -- at the center of his loving family.

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