Hospice care delivers many benefits to terminally ill patients and their families, helping people manage the physical, emotional, and spiritual aspects of end-of-life planning. Unfortunately many patients are referred to hospice service late in the disease process. Some are referred so late they cannot fully realize the full positive impact hospice is known to have on physical and emotional comfort and overall quality of life.
Serving in the role of patient advocate, healthcare providers are encouraged to learn as much as possible about the hospice approach and refer patients as early as possible. When is the right time to refer a patient to hospice? There are telltale signs. “When treatment is no longer as effective as it used to be, when quality of life has diminished, when the patient experiences frequent hospitalization…this is the time to seek hospice care,” explains Maggie Stockton, nurse practitioner at Crossroads Hospice in Kansas City, Missouri.
Alison Taylor, a nurse practitioner at the Crossroads Cincinnati, Ohio office, agrees and advises professionals to engage in the hospice discussion as early as possible. “Sadly hospice is often not brought up as an option until very near the end of life. There is so much to be gained by it; hospice should be discussed openly as soon as it becomes clear the illness is terminal.”
Benefits Present at the Start
Discussing death and making end-of-life plans is not easy for most people. It makes us uncomfortable to think about our own death or the death of loved ones. But for the terminally ill, hospice provides a welcome avenue for helping make informed choices. “The hospice approach encourages and supports families in talking about their wishes. Hospice staff guides the discussions people might never have on their own, or wait until it’s too late to have,” says Taylor.
An important benefit of hospice is that it connects staff such as chaplains and social workers, who are experts in end-of-life conversations, with patients and families as quickly as possible to ensure the maximum benefit. Once the more difficult topics are addressed, patients and families feel freer to focus on the quality of their lives, making the most of the remaining time. And when pain is controlled, patients are better able to manage the emotional tasks that accompany the end-of-life transition.
“A third of patients come onto hospice so late they die within a week or two of admission,” says Stockton. The ideal situation — where patients benefit most — is when they can experience at least three months of hospice care. “If patients are referred to hospice sooner, we can do a great deal more to manage pain and other symptoms and also enhance closure for patients and their loved ones.” Stockton goes on to explain that an early referral to hospice can reduce the risk of complicated grief. “The earlier a patient comes on service, the sooner we can help them deal with unresolved issues, express their feelings, and work through anticipatory grief and feelings of fear and anxiety.”
Making an Early Referral: Breaking Down Barriers
A common barrier to an early referral may be the feeling of “giving up.” “People in the healthcare profession may feel making a referral to hospice is a reflection on their ability to treat or cure a patient,” says Taylor. “To refer hospice may seem like an admission this may be the end for a patient. Also, the healthcare profession in general tends to view death as failure.” The truth is, hospice is moving to a different level of care — one that acknowledges aggressive treatment is no longer working and which enables symptoms to be managed and quality of life to be enhanced.
“Hospice is not necessarily the end either,” Taylor says. “Some people improve and go off hospice.” Her overriding message is the sooner a patient is referred to hospice, the more care and comfort they will receive.
Another roadblock to an early referral may be a feeling that the patient’s care will be removed from the physician’s control. “Physicians often don’t realize the hospice medical director can help them in making the referral and they are also welcome and encouraged to stay involved with the care of the patient following referral,” says Stockton. She suggests viewing hospice referral as one would refer a patient to any other medical specialty. “You would refer a heart patient to a cardiologist. In the same way you should refer a terminally ill patient to receive the advantages afforded by the hospice care specialty.”
Advice for healthcare professionals who see the signs but are apprehensive about making a hospice referral: Keep an open mind. “Don’t be afraid to have the discussion,” encourages Taylor. “Be open and honest. Ask the patient what he or she wants. Allow the patient to lead the discussion.” She also advises physicians to sit in on a hospice conversation started by a peer and his or her own patient. “Watching and listening can be helpful in knowing how to engage in the hospice conversation and, in turn, become more comfortable with the practice.”
Stockton explains hospice should be viewed by physicians as a continuation of “good medical care.” She encourages physicians to ask patients about their goals, their hopes, and their fears and to get them involved in talking about hospice early on in the disease process, and then throughout the disease progression.
“We didn’t realize how helpful hospice is… We wish we would have been told earlier.” These are the sentiments Taylor and Stockton wish they didn’t have to hear from patients and their loved ones. The more awareness the healthcare profession has about hospice, the earlier referrals can be made and the more benefits can be realized by patients and family.
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