Published in the June 2005 issue of Today’s Hospitalist.
When caring for patients at the end of life, how do you balance the information your patients want with the details their caregivers need?
A growing body of literature is making a case for giving caregivers, particularly individuals who are looking after patients with terminal illnesses like cancer, different types of information than patients. Caregivers often need detailed types of information “when and how their loved one will die, for example “that patients may not need or even want.
On the surface, however, the notion of giving patients and caregivers different types of information seems to fly in the face of another principle of palliative care: creating an environment of open and consistent communication. How can you maintain an atmosphere of open communication, after all, if you’re giving caregivers different “and more detailed ” information than patients?
Some answers to that question can be found in a new study. A team of Australian researchers conducted focus groups and one-on-one interviews with three groups “palliative care providers, terminally ill patients and caregivers “about endof- life care communication. The results of the study, which appeared in the May 1 issue of Cancer, shed light on the different needs of terminally ill patients and their caregivers, and how physicians can balance those different needs.
While the results may not be news for seasoned palliative care providers, they may help physicians like hospitalists who see patients at the end of life and face situations in which communicating can be difficult.
Open but separate conversations
After interviewing the three groups, researchers identified several trends in end-of-life communication.
For one, clinicians, patients and caregivers all agreed that open discussions and consistent information are keys to effective end-of-life care communication. At the same time, however, they also supported the idea of giving different types of information to patients and caregivers “even if that requires separate conversations.
Lead author Josephine M. Clayton, MB BS, a research fellow in the medical psychology research unit at the University of Sydney and a palliative care physician at St Vincent’s Hospital in Sydney, says that patients have different informational needs than caregivers because of very practical considerations.
Patients with terminal illnesses, she explains, often don’t want to know every last detail, such as how and when they’ll die. Their caregivers, on the other hand, need exactly that type of information, particularly if they are caring for the patient at home.
“In that terminal phase,” Dr. Clayton says, “caregivers often need more detail about the dying process than the patient. Perhaps the dying person doesn’t want to know all about the nitty gritty details about what could go wrong, what to expect in those last days. The caregiver needs that information.”
A perfect example? While patients may take a pass on hearing about complications like seizures that occur around the time of death, caregivers want to know what to expect so it’s not a shock.
Caregivers also typically want information about how much time they’ll need to take off work, what they’ll need to do to care for the patient at home, and how to tell when the patient has died.
Respecting patient autonomy
While patients and caregivers alike may agree that they have different informational needs, how can physicians give everyone the detail they need without violating the patient’s autonomy?
Dr. Clayton points out that when patients are terminally ill, practical considerations must be balanced with autonomy. “When you have someone who is terminally ill and dying and being cared for at home,” she explains, “it has a huge impact. The family members are doing most of the caring, so that information has huge implications for them.”
That doesn’t mean, however, that patient autonomy vanishes. Dr. Clayton says that the clinicians interviewed for the study follow the standard practice of getting the patient’s permission to talk to caregivers about their condition.
“We ask patients if it’s OK to have a chat with their family members,” she explains. “We might give them the option to be present for that conversation. Often the patient is happy for us to talk with their caregivers separately. They’re often aware that there are things that the caregivers want to know that the patient doesn’t necessarily need to know.”
Dr. Clayton says that the take-home message for physicians like hospitalists who find themselves involved in endof- life situations is simple: “Think of the caregiver’s information needs and realize that they may be different from the patient’s. You may need to allow the opportunity for patients and caregivers to have their needs met by having separate discussions.”
As the study points out, however, that situation can become more complicated when caregivers want to withhold information from patients. Some of the clinicians interviewed for the study reported that caregivers sometimes don’t want to discuss end-of-life care issues in front of patients, typically because they want to protect their loved ones from upsetting information.
Dr. Clayton says that the issue of withholding information from patients is most often an issue when patients do not speak English. “If you have non-English speaking patients whose only contact with health care professionals is through interpreters or family members,” she explains, “they might have been told that they have a tumor. Sometimes people don’t want the word cancer used, or they don’t want the patient to be told that it’s incurable and isn’t going to go away.”
Most of the providers interviewed for the study said they would try to talk to patients to get an idea of just how much information they wanted about their diagnosis and prognosis. When the patient doesn’t speak English, however, that strategy usually fails.
In those cases, some clinicians said they would try to encourage the family to have an open conversation and acknowledge the condition of the patient. Other clinicians took a slightly different approach and said they would honor the family’s request to limit information given to the patient. If the patient asked a direct question, however, they told the family members they would answer it honestly.
One individual reported that if the patient asked a question, he would make sure the family was present when he answered it. Still others said they negotiated what would and would not be discussed.
Dr. Clayton says that many of the clinicians interviewed for the study took a fairly passive approach when caregivers wanted to withhold information. “If a patient asked a direct question,” she explains, “all said they would answer honestly, but they didn’t actually raise the issue with patients.”
“Some health professionals would go along with what the family wanted,” she continues. “Others would try to gently explore the patient’s understanding, but that was in the more proactive end of the spectrum. The other was to just go along with the family’s wishes, because there was a feeling that people from different cultural backgrounds have different views on these things.”
Part of physicians’ reluctance to take on a stronger role had to do with cultural issues. Many clinicians said they wanted to be culturally sensitive and try to respect the different views of patients and families.
Researchers documented one example of a cultural difference in how non-English speaking patients view health care. The paper notes that in these situations, family members and caregivers often take a collective view of patient information.
As the article explains, “Information regarding prognosis and diagnosis was not viewed as being owned by the patient but rather as having an effect on the entire family.”
Some clinicians had an even more practical reason for cooperating with family members and caregivers who insisted on withholding information from patients: They didn’t want to upset the family and ultimately hurt the patient’s care.
Dr. Clayton explains that some clinicians had experiences where they had protected patient autonomy. The family was so angry that it refused to let the patient have further contact with the palliative care service. In such instances, keeping the peace will ultimately result in better patient care.
“It’s partly a pragmatic thing,” she notes. “In order to be able to get in there and provide support for the family, you need to be careful instead of just going in boots and all and putting your own assumptions on the family.”