The Hospice Conversation
Arizona Physician
Spring 2020
by Dr. John Williams, Hospice of the Valley
Hospice care can remove some of the burden of care for struggling patients and their families by providing a network of support, symptom management and security that we, as physicians, alone cannot always provide.
The purpose of hospice care is to maximize quality of life for patients in the last phases of a disease that cannot be cured. Hospice care provides collaborative and comprehensive care for the patient and the family at a most difficult time.
Introducing the concept of a hospice referral to patients and their families can be a challenging and difficult conversation for us as physicians. We may not be comfortable with shifting from a curative perspective. Feelings of patient abandonment can arise, and both patient and family may feel they are just being told to give up.
A hospice referral, however, more appropriately represents a broader and more inclusive level of care, focusing on patient comfort, dignity and symptom management. Hospice care can remove some of the burden of care for struggling patients and their families by providing a network of support, symptom management and security that we, as physicians, alone cannot always provide.
Symptom management, after-hours clinical support, in-depth social worker involvement, help with daily living activities and spiritual assistance all come into play with a hospice referral. Hospice organizations welcome the continued involvement of the primary physician, as patients transition to a comfort-based philosophy of care. The hospice medical director seamlessly partners with the patient’s doctor to provide oversight, treatment and guidance.
While some hospice referrals occur at the hospitalist level, following a hospitalization and subsequent decline, all hospice referrals require thoughtful conversation and guidance. Here are four scenarios that may trigger a hospice conversation.
1. The patient is burdened by the impact of aggressive treatments and desires comfort care. This notion can be more difficult for the family or physician than for the patient. Yet the desire for comfort and dignity can be a decision that actually empowers patients and brings an inner peace. It also provides a time for them to share reflections on their lives and accomplishments, and even to mend fences. In some cases, discontinuing curative treatments can allow patients to temporarily improve and even extend their lives.
2. There are no further aggressive or effective treatment options available for the patient’s illness. In such cases, guidance toward hospice services provides for active symptom management, in-home care, medical equipment, pharmacy needs and supplies — all covered under hospice care. Working together to meet physical, emotional and spiritual needs, the hospice care team includes a physician or nurse practitioner; nursing and social worker support; aides who provide assistance with personal hygiene; and chaplains who comfort both patient and family. Volunteers provide companionship visits to ease loneliness — often with soothing music or cheerful pet therapy.
3. A patient faces continued decline despite frequent hospitalizations or escalating intensity of interventions. In-home hospice care can provide welcome stabilization with home treatment options for pain, other symptoms such as shortness of breath and recurring infections. It can also reduce anxiety because patients and families have 24/7/365 access to one of our healthcare professionals, as well as a nurse who can visit, should they have an issue in the middle of the night or on weekends.
4. A patient’s condition presents difficult or challenging symptom management. As patients near end of life, a team approach can be beneficial when treating challenging conditions like dementia behaviors or severe respiratory distress. Hospice care teams are experienced at connecting caregivers to community resources and providing comfort to family members who may be feeling vulnerable and overwhelmed. The use of an inpatient unit can be beneficial in developing an effective treatment plan to manage behaviors or symptoms and can also provide caregiver respite.
In summary, the hospice discussion can be a challenging and anxious one. But in keeping with the purpose of hospice, it strives to maximize quality of life for patients and help them enjoy every moment. It represents a promise of improved comfort and dignity at a time when families may struggle with feelings of relative hopelessness. It can provide the opportunity for physician collaboration to achieve desired goals of care. It extends the trusted patient-family-physician relationship with a conversation that can bring peace of mind. And it helps families receive the kind of compassionate care we would want our own loved ones to have. Finally, from the patient perspective, there is no better source of opinion or advice than a trusted physician.