When patients and their families hear a recommendation from their physician for hospice they often decline and don’t allow hospice to become involved. In doing so, they are missing out on care and services that could be very helpful.
The term “hospice” invokes fear in many patients and their families. They believe that, when a patient goes on hospice, death is imminent. Families sometimes resist having hospice even mentioned to their loved one because they believe their loved one will “give up” and die more quickly.
In fact, hospice can be offered to patients who have a life expectancy of up to six months. Hospice offers symptom control such as pain management at home, away from the uncomfortable and impersonal environment of a hospital. Hospice offers psychological help for management of anxiety and/or depression for both the patient and family. Hospice offers social help, arranging services for patients and caregivers. And hospice offers spiritual help for patients and their families which can make the journey easier for both. One can see that if these services are provided earlier and longer during the patient’s course, more than just a few days or couple of weeks as is often the case, the benefits would be much greater.
Let’s look at each of these benefits separately. Symptom control, such as pain management, is of prime importance. It’s not surprising that patients whose pain is controlled are more content with better quality of life. Medication regimens that combine slow-release, long-acting pain medications in addition to “breakthrough” (short-acting, prn) pain medications are more effective than short-acting pain medication regimens alone for patients with continuous pain such as cancer patients. Keeping some pain medication in the patient’s bloodstream at all times is usually beneficial. Hospice providers are experts at providing the best and most effective pain medication regimens. They’re also experts at providing pain medication by alternate routes, such as sub-Q or IV, for patients that are unable to swallow. And they’re experts at treating other symptoms sometimes experienced by hospice patients such as nausea, constipation, and breathlessness.
Many patients with terminal illness, and even some caregivers, suffer from anxiety and depression. Patients with depression tend to experience more pain. Hospice providers can coordinate efforts to treat these patients with antidepressant medication and counseling.
Hospice patients’ experiences are also influenced by their relationships with their caregivers including family. By arranging and coordinating the services to be provided to the patient, the social workers can greatly ease the burden on the family.
Finally, hospice patients often have spiritual issues. Faced with a limited life expectancy, patients can have hope that their spirits will live on past the grave in the presence of a loving God. These patients and their families are often very interested in discussing these existential questions about life and death. Physicians have recognized for decades that patients who come to grips with their faith, whatever that faith may be, have a better overall experience and even require less pain medication. Hospice chaplains are invaluable in helping the patients with these spiritual issues and helping families with the grieving process.
And what of the assertion that patients will die more quickly if they’re on hospice? There’s not one shred of evidence to support that assertion. In fact, there are studies to suggest that patients actually live longer when given very good supportive care, as they would receive on hospice. Some patients improve clinically while on hospice such that their life expectancy lengthens. These patients can come off of hospice and be re-enrolled at a later time if needed.
When a recommendation for hospice is made by a physician, the patient and family should have already been told the diagnosis and prognosis. Patients can be quite functional when enrolled on hospice and still benefit greatly due to the myriad of services provided. And hospice is paid for by Medicare (which covers the cost of many medications) and most private insurances due to the benefits and because it is still reasonable from a cost perspective if many patients are able to avoid the exorbitant cost of hospitalization. So, why wouldn’t the patient and family want to benefit from all of these excellent services?
What is there to be afraid of?