What You May Not Know About Hospice

Linda said that there were two surprises when her mother received hospice care. First, she was pleasantly surprised at how much was covered by Medicare: a cane, walker, incontinence products, medications for comfort and more. Second, she was moved by the kindness of each person — social worker, nurses, chaplain, aides and others — who supported them during the experience.

Like many others, their journey was not straightforward. Linda’s mother began hospice while in independent living at Ivy Creek and continued after she moved to a memory care center. After breaking a hip, she temporarily left hospice to try surgery. Later, she returned to hospice after transferring to nursing care. “My mother was well cared for during her last days,” said Linda.

Throughout Linda’s decision-making, hospice workers helped with the progression of change, allowing Linda to be present during her mother’s declining health. “Heartland Hospice in Chadds Ford served as cheerleaders and helped me think things through,” she continued. She still receives calls from the chaplain and social worker every few months and shared that she feels ready to move on.

Let’s Talk About It

The need for hospice care comes with a lifetime’s worth of emotions. While most people understand that sadness, grief and fear can be front and center, hospice can help bring comfort, relief, laughter and joy. People in a variety of hospice roles talked about what many patients and loved ones said they wished they knew earlier.

When to call about hospice — sooner, rather than later.

“Calling about hospice isn’t about giving up. It’s about having a conversation about making life better for the patient and their loved ones,” said Charles McDonough, CEO of Delaware Hospice — a nonprofit, community-based healthcare organization that offers compassionate, expert care and support.

Hospice isn’t just about the end of a life-story. For patients, it’s about living final days better with choice, dignity, trust and joy. For spouses and grown children, it’s about spending time as a family, instead of as caregivers, and turning over some of the difficult tasks to someone who feels honored to help at a pivotal point in life.

Monica Sullivan, executive director of Crossroads Hospice — an organization serving the Philadelphia region including Chester County and that prioritizes spending time with patients — concurs. “Entering hospice doesn’t mean you’re dying today. You’re entering a quality-of-life conversation.

What do you want out of life?” Conversations take into account what patients want, choose and how they make the most out of their time while living.

Electing hospice isn’t just one “permanent” decision.

You can exit the program and return to it later, if you choose. “If you change your mind and want to start chemo, that’s okay,” said Sullivan. You can leave the hospice situation if you want to try treatment.

“Even if you elect it, you don’t have to have a DNR [Do-Not-Resuscitate order],” said McDonough.

People of all ages are eligible for hospice.

This article is one in a series about senior communities and continuing, progressive care, so it focuses on older adults. Hospice is an option for others as well.

While entering hospice is based on a terminal illness with less than six months to live, there can be extensions.

No one is rushing the patient out the door. Certain bereavement services are covered for family members for 13 months after the loss of their loved one.

Medicare has a definition and standards for hospice, but hospice is more.

Medicare is a federal program with a minimum level of care and benefits. Wherever you are in the U.S., regardless of what your insurance is, there’s a preset level of service you can receive.

Levels of Care

Because hospice providers have the same requirements, the numerous organizations throughout the Brandywine Valley — including Crossroads, Delaware Hospice, Heartland, Holisticare, Main Line Health, Penn Medicine, Willow Tree and others — offer the same required medical care and services. All must be able to provide four levels of care:

• Routine care takes place where the patient is living, whether a longtime homestead, older adult community or loved one’s home.
• Continuous home care takes place where the patient is already living, but often starts with an unusual event such as agitation, medication change or a patient’s pain that’s out of control.
• Inpatient care can take place at a skilled nursing facility, special medical facility that feels like a home, or hospital — perhaps referred when the patient is already there for medical care or referred by the hospice program.
• Respite takes care of the patient, but is designed to help the caregiver. Families experiencing exhaustion from physical and emotional stress after tending a loved one for a long time can get a five-day break to prevent burnout.

Because the minimum level of service is preset, questions to ask hospice organizations should include how they deliver those specialty services and what extras they provide. Will the same nurse stay with the patient throughout their time on hospice? Will someone be present at the time of death, if wanted? Is the organization based in a specific faith’s practices?

The earlier the conversations start, the sooner help can start.

Finding Peace

In one case, Crossroads Hospice was able to help a patient with ALS take control of when, where and how she transitioned, when other organizations were reluctant about the liability of leaving a hospital to return to her house. On a ventilator, she decided to end treatment and die at home. A special team including a nurse practitioner, nurse, social worker, chaplain, pharmacist and family gathered with the patient to discuss her wishes.

Crossroads advocated for her. “The patient was very aware of what she wanted. It was our gift to her and the family to help make it happen,” said Sullivan.

The patient planned what her surroundings would be, who would be in the room, favorite songs that would be played and whose hands she held during final moments. “She truly lived to the end,” Sullivan said.

Matters of the Heart, Soul and Spirit

Whether part of a hospice organization or outside of one, there are many complementary options for pain and stress relief: sound and music therapy, reiki and massage, healing harp, pet therapy, spiritual care, guided visualizations to reduce fear and more. Compassionate volunteers give their time and service. End-of-life doulas are growing in significance, mainstream recognition and numbers.

End-of-life doulas work within HIPAA and have ethical standards. They can help with practical support for exhausted family and caregivers, discussing last wishes or funeral arrangements, or writing notes to friends. It’s usually a calling, according to Robin Nelson Woodward, a local end-of-life doula with a certificate from the University of Vermont.

For the client, Woodward’s role involves “companioning” — focusing on actively listening to what the patient wants with unconditional positive regard and being present to pain. “It means going with them to the wilderness of the soul. We believe the dying person has their answers and we don’t take that away. It honors spirit and bears witness to struggles,” said Woodward.

“Near the time of imminent death, we move toward it, not run from it,” she continued. “We embrace its sacredness. Like people who are present at the birth of babies, we also see miracles.”

Interviewees who spoke with County Lines talked about the privilege of being with patients and families during a milestone. According to Delaware Hospice’s McDonough, when you begin hospice, “you inherit a family. Aides become caregivers. Nurses become part of the family.”

My father’s last week was in a small, beautiful hospice center close to his home. The large room had a bed for my mother and a sunny window for watching a bird feeder. Meals, massage therapy and loving attention were available for Mom, as Dad slept without pain or the worries of Alzheimer’s. Once when he awoke briefly, he stroked a therapy dog, calling him by the name of his childhood four-footed best friend.

After Dad died, staff member lined the hall to honor him as the gurney passed by. The hospice team gave Mom hugs and a teddy bear with a crystal tear in the corner of its eye. These gestures were not mentioned on any brochure, but were reassurance of love and life — the message that we are never alone even when we, who are still walking the Earth, are beginning our solo flight.