For a physician, having the hospice conversation with a patient can be viewed as a difficult proposition. However, when approached with perspective and preparation, a discussion about hospice can be easier to manage for all involved.
The best approach is to discuss the hospice option as early in the disease process as possible. “Physicians tend to wait too long to have this important talk,” says Aliya Ali, M.D., Medical Director for Crossroads Hospice in Philadelphia. She recommends introducing the concept of hospice up front — at the time of the initial diagnosis if possible — and then working it into the patient’s treatment plan. “If you can help it, don’t wait until the patient and the family are in a crisis situation,” she advises. Explaining that hospice is a change in the focus of care — moving away from restorative care to a comfort-directed path, not giving up on care — is the place to start. Then don’t stop there. “Weave the concept of hospice throughout the disease journey,” suggests Dr. Ali. Talking about hospice candidly and often helps make the idea easier to understand and digest, and ultimately enables the patient to make an informed choice.
Hospice Does Not Signify Failure
A physician’s hesitancy to discuss hospice often stems from how it is viewed by the medical community. Physicians have been trained to cure illness and improve health. To shift the goal of improving physical health to enhancing a person’s overall quality of life may be philosophically difficult to accept. Physicians sometimes feel that even discussing hospice signifies failure on their part.
“Physicians should step back and focus on the patient as a whole — not just on the disease process,” explains Dr. Ali. “In dealing with a terminal illness, end of life is not about the success or failure of the physician. End of life is about the failure of the body. Hospice, therefore, is not about giving up hope, rather creating hope-filled experiences for the patient at the end of life’s journey.”
Dr. Ali also advises physicians to offer a variety of recommendations, including hospice care, in an effort to help families make the best choices. “Don’t be afraid to discuss all the options, but be careful to avoid ‘because we can, we should’ thinking,” she says. “Rely on your expertise and be confident in making recommendations, including hospice. This can go a long way in helping patients and families feel less overwhelmed and anxious.”
Dispel the Myths to Create Effective Dialogue
Myths are common in hospice, for both patients and physicians. Breaking through the myths helps ensure each conversation about hospice is accurate and productive.
Myth: Hospice is only appropriate for the last few days of a terminal illness.
Truth: Hospice’s goals are symptom management and quality of life. If a patient’s health status is in continual decline, he or she likely qualifies for hospice care sooner.
Myth: A patient cannot leave hospice.
Truth: Patients don’t always continually decline. Sometimes health will improve. Hospice is based on ongoing evaluation. Patients can come off or go on hospice as needed.
Myth: If on hospice, a patient cannot receive any treatment.
Truth: Hospice is not based on a “no treatment” philosophy, rather a shift in treatment goals. If a patient is on hospice for cardiac problems and then breaks a bone, that injury can be treated without coming off hospice.
Myth: All medications stop and morphine is administered.
Truth: Medications that are necessary to preserve quality of life are continued. A multi-disciplinary team ensures medications are continually evaluated and discussed.
Myth: Patients die sooner on hospice.
Truth: According to the National Hospice and Palliative Care Organization, hospice care patients can live 29 days longer than non-hospice patients, with a better quality of life.
Get Comfortable with the “H Word”
Physicians have numerous places to turn for information about hospice, including books and professional sources such as the American Academy of Hospice and Palliative Medicine. But perhaps the best advice is to contact a colleague who is a hospice physician. “Physicians tend to have scripts in our heads for speaking to patients about specific subjects,” says Dr. Ali. (See our “physician to physician” video on talking about hospice with patients: http://tinyurl.com/lzhhxw9.) “Many of us though aren’t as well versed in scripting for a hospice conversation as we could be.” To bone up, she suggests talking to a colleague to get familiar with key phrases to help facilitate meaningful conversations with patients. Additionally, timing and location are important considerations. Some best practices for having the initial conversation:
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Allow plenty of time. Meet in a quiet room free of distractions.
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Always be seated.
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Ask the person to tell you in his or her own words what is going on with his or her health. Then explain what you know, giving time for that information to be digested. Follow this with a prognosis and review of options, including hospice. Be open and truthful.
If a patient is unable to participate in the conversation but family members are, ask: “What would the patient say?” Bringing the patient into the conversation metaphorically helps remove the burden of making all the major decisions from the family which can bring tremendous relief. Hospice is a valuable service to the terminally ill. Physicians can, and should, play an important role in a patient’s end-of-life journey. Understanding the role and value of hospice — and having the conversation early and often — enables physicians to offer patients and their loved ones the gift of choice and quality of life.
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