The word “hospice” often conjures up images of people lying in bed in a darkened room, with loved ones speaking in hushed voices so as not to disturb the patient. Others may view the term hospice as a last resort, a path taken when death is imminent.
Although some do have the above experiences at life’s end, I am here to share the good news that hospice is hopeful and that the dying process can be a beautiful experience.
As the U.S. bishops state in their Ethical and Religious Directives for Catholic Health Care Services, “for the Christian, (the) encounter with suffering and death can take on a positive and distinctive meaning through the redemptive power of Jesus’ suffering and death.”
While the pain and fear that surround illness and death are very real, the bishops stress that in Christ we have “confidence and grace for bearing suffering rather than being overwhelmed by it.” In fact, “for those who are in Christ, suffering and death are the birth pangs of the new creation.”
A number of valuable resources are available to help patients and families navigate illness and dying, including those offered by the Catholic Medical Association (CMA), the National Catholic Bioethics Center (NCBC), the archdiocesan Office for Life and Family and the Catholic Health Association (CHA).
It is in light of the above that we begin to explore the hospice experience.
First, let’s talk finances. From an insurance perspective, hospice is a Medicare/Medicaid benefit. Medical equipment, incontinence products, some medications, physician oversight, in-home skilled nursing care, social work, chaplaincy, music therapy, volunteers and certified nursing assistants are among the included services.
Private-pay insurance coverage for hospice care is also available, depending upon the provider.
To qualify for this benefit, there must be two physicians who certify that a patient’s life expectancy is six months or less based upon meeting specific clinical criteria. Although this time frame may be true for some, take comfort in the fact that some patients live for years while on hospice.
In contrast to the traditional medical mindset, which focuses on curing the patient, hospice centers on managing symptoms. As a result, many patients experience an enhanced quality of life because they can now comfortably savor time with family and friends.
It is common for caregivers to worry that they may be giving up on their loved one by considering hospice. For others, it may be a relief to disconnect from frequent emergency room visits, as well as physically and emotionally challenging trips to a doctor’s office.
With hospice, care comes to you in the comfort of your home. Available around the clock, the hospice team replaces emergency services.
How does one decide whether or not to move forward with hospice care? Understandably, this step can be emotional and sometimes confusing. Often there are times when a person’s medical condition becomes futile. This means that no therapy or treatment will offer reasonable hope of benefit to the person. Nor will it stop his or her progression toward death.
Hospice care, in which pain and symptom relief is provided for terminally ill patients not expected to live longer than six months, offers such care to help these persons live as well as possible despite their medical condition.
Based on this guidance, a caregiver can choose to initiate a conversation with the primary care provider if the loved one is of diminished capacity. At other times, an individual may voluntarily pursue hospice after speaking with a health care provider.
Another option to consider is contacting a local hospice agency, such as the one at Holy Redeemer Hospital. Once a hospice agency has been identified, an initial assessment would take place in the patient’s place of residence.
A nurse case manager, social worker, chaplain and physician would then be assigned, creating an interdisciplinary team (IDT) to focus on a patient’s needs. Routine visits from these professionals and from a home health aide would be scheduled. Ideally, the IDT should meet biweekly to discuss the care of a patient in additional to the caregiver’s well-being.
This process may evolve, but the goal remains to maximize the safety and comfort of a patient and his or her loved ones.
After choosing hospice, you or your loved one may decide at any time to return to curing, rather than simply managing, symptoms. No one will deny you the health care you seek; rather, both paths are options to consider.
As the U.S. bishops remind us, “the dying process is a sacred time — a final season to seek closure in this life and prepare for the next in the hope of sharing in Christ’s Resurrection. As you enter into this season with your friend or family member, ask God to accompany both of you.”
Aimee Gustitis is a registered nurse and caregiver consultant who for the past 10 years has worked in long-term care, home, hospice and hospital settings to help caregivers navigate both senior health care and school-based nursing care systems. She is also coordinator of the Archdiocese of Philadelphia’s Nourish for Caregivers ministry, which is offered through the archdiocese’s Office for the New Evangelization.
For more information on Catholic teaching on end-of-life care, and to request an ethical consultation, contact the Archdiocese of Philadelphia’s Office for Life and Family.
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