When is the Right Time to Start Hospice?

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Making the decision to start hospice care for a loved one is overwhelming. It means acknowledging that the end is near. But the decision is also empowering, because an array of supportive care and assistance becomes available to both the patient and family. Nursing is just the start. For example, services from local provider Hope Hospice include:

• Social workers to assist with medical paperwork and resources.
• Home health aides for personal care.
• Comfort medications delivered to the home.
• Needed medical equipment, like a mechanized bed for the home.
• Dementia specialists to assist with care challenges or education about the condition.
• Registered dietitians for counsel on needs of a hospice patient.
• Volunteers to provide companionship to the patient and relief to the family caregiver.
• Spiritual care.
• Grief support.
• 24/7 triage support for after-hours urgent issues.

Hospice is a vastly underused Medicare benefit in the United States. A 2020 report from the National Hospice and Palliative Care Organization, using data collected in 2018, states that over 50 percent of patients were receiving hospice care for 30 days or fewer. That’s a far cry from the expected six months (the general life expectancy that qualifies a person for hospice). What’s worse is that 27.9 percent were on hospice for just one to seven days. This means that many families are waiting until death is imminent before starting their loved ones on hospice.

Why Do Families Wait So Long to Start Hospice Care?

With advances in medical technology, individuals today are living longer with chronic and life-limiting illnesses. As new treatments become available that may add years to one’s life, it’s understandable that a family and/or patient would want to exhaust all possible curative measures.

While it’s true that some interventions can slow a disease’s natural course, the decision-maker should weigh this against the patient’s quality of life. For example, a person with cancer who undergoes chemotherapy or other treatments may improve or even go into remission. This is not the result for everyone. And even for those whose treatments are successful, the treatments may come with severe side effects.

The decision of when to start hospice often comes down to the word hope—many people equate hospice with giving up hope that their loved one will get better. To them, hospice means bringing a loved one home from the hospital to die. Decisions of such magnitude made from that perspective are understandably stressful and emotional.

Yes, their loved ones will die at some point; it’s a natural part of life. Hospice neither hastens nor postpones death. It was designed to help patients make the most of each day in their final season of life. The care team provides all needed resources to help families care for a loved one in the comfort of home.

Accepting Grief

Most people think of grief in terms of what happens after a loved one dies. But there is such a thing as anticipatory grief, which is the sadness experienced before loss when it is understood that a person will be passing soon. Different family members will handle anticipatory grief in unique ways, and it’s important to give each person the space that they need. Struggling with anticipatory grief might be the main reason that a family delays starting hospice.

Every member of the hospice team can support the family and patient through this process, but it is often the social worker, chaplain, or bereavement counselor who helps facilitate family discussions about grief. So, starting hospice sooner than later is helpful not only for the patient, but also in assisting the family with processing their approaching loss.

Decision Factors

Back to that word hope. Hospice can be an opportunity to redefine hope. It can become one’s desire to create a peaceful, comfortable environment in which their loved one can live their final months. The family can take charge of each remaining day and celebrate their loved one and the impact they had on them and the world.

Various studies cite different lengths of time, but all agree that patients with terminal illnesses live longer with hospice care than without it. Why is this?

• Reduced fatigue, exhaustion, and stress that was previously caused by travel to facilities for treatments.
• Arriving at a place of internal peace because battling a disease has ceased.
• Care is provided in the comfort of home instead of a sterile hospital where environmental stressors are abundant and out of the patient’s control.
• Being surrounded by pets and loved ones is uplifting and soothing.
• The hospice team is composed of many practitioners working together to ensure the patient is cared for on a holistic level. Spiritual and emotional needs are just as important and medical needs.

At any time during a life-limiting illness, it’s appropriate to discuss all care options, including hospice. Note the distinction between being eligible for hospice—i.e., the patient’s doctor estimates a life expectancy of six months or fewer—and being emotionally/mentally ready to begin hospice. The latter is unique to each patient and family and something that they must decide for themselves.

Considering these questions with or on behalf of a loved one can help a person decide:

• Do I want to continue treatments that may or may not improve my condition?
• Do the side effects of my treatments outweigh the benefits?
• How do I envision my final months? Am I okay with spending that time in a hospital?
• Are there things I want to accomplish before I die? How would continuing curative treatments impact these desires?

To learn more about Hope Hospice and its various programs and services, visit HopeHospice.com. The Admissions Team is available at (925) 829-8770 to answer questions. Hope Hospice is a 501(c)(3) nonprofit organization that has been serving the Tri-Valley and adjacent East Bay cities since 1980.