Hospice care is geared toward maintaining quality of life long before death is near

(PennLive) Let’s play a quick game of word association. Upon hearing the word “hospice,” what word comes to mind? The word “death” – and more likely “imminent death” – is a common answer.

“I used to think hospice was just for when you were about to die, but they’re really about life and they’re about help and lots of it and they’re about the caregiver and listening,” said Evelina Krall, a North Lebanon Township woman whose mother was on hospice for about a year and a half before her death from Alzheimer’s disease in March 2012.

Though it’s true that a person must have a terminal diagnosis and a physician’s order to be placed on hospice, it’s not true that a family or patient need only call for hospice services when death is imminent.

“Our goal is provide quality of life regardless of whether that’s two days or two years,” said Dan Leber, executive director atAseraCare Hospice, which provided care to Krall’s mother and family.

Just the word ‘hospice’ sometimes creates a lot of anxiety for patients or families,” Leber said. “I don’t think there’s a single hospice that focuses on death and dying; we focus on helping you live with dignity and comfort.”

While hospice obviously encompasses the clinical side of care, it’s the human side that makes it a special service for patients and families, Leber said.

“The biggest thing I think we offer is support,” agreed Karen Kressley, hospice director for Good Samaritan Home Health and Hospice in Lebanon.

“We’re not there to help them accept the situation; we’re there to help them through it, to talk with them about their emotions or to get them the help they need to talk though it,’’ Kressley said. “Our supportive care of the patient allows the caregiver to focus on being a spouse or a daughter or a mom. We’re not coming in and taking over control of the situation; we’re giving them control over how they want to handle things.”

“We’re able to help them get the best quality of life so they can meet their goals,” said Tonya Miller of Celtic Healthcare.

Sometimes families know their loved one needs hospice care and they would like the support and help themselves, but they don’t know how to broach the topic with their loved one. What then?

“We can come and introduce ourselves as a resource. We go very gently because patients are having to adjust tremendously to all kinds of changes,” said the Rev. Brian Medkeff-Rose, chaplain with Hospice of Central Pennsylvania. “I learned years ago to emotionally dance with them and take their lead as to where they are with the changes, the fears, the joys and the hopes they have.”

Medkeff-Rose said gaining a patient’s acceptance of the care may come down to assuring them that they will still call the shots in their care and that hospice can provide relief for their family members.

“Patients often come into hospice fearful, but they learn to trust us and they end up telling me that they couldn’t have done it without us,” he said. “They may even start to feel better because now their symptoms are controlled and they can do the things they want to do.”

It’s important to help patients be able to do the activities they value, said Tonya Miller, regional vice president with Celtic Healthcare, which recently expanded its hospice services into Lebanon County.

“Maybe patients want to go to a granddaughter’s wedding, go out to dinner once a week or take a vacation,’’ Miller said. “We’re able to help them get the best quality of life so they can meet their goals’’

Krall, who worked full time and hired private caregivers for her mother, F. Rosalie Bross, said her hospice team was a “lifeline” for her.

“They were my encouragers. I could call them in the middle of the night if I was worried about my mother. I was new at this and I was very nervous about doing it right,” said Krall, who made her living room into a bedroom for her mother for two years. “A pastor came regularly to pray with my mother and the social worker talked to me about my feelings and how I was coping. They were all there for me in the daily struggles.”

The hospice nurse also told Krall what to expect when death was near and not to feel guilty if she wasn’t by her mother’s side when she died.

“My husband and I were sleeping on couches near her. I told her that we were in the same room and that she should go to sleep and go to heaven now,” Krall recalled.

Bross died in the night, on the same day her husband had died eight years previously.

The hospice nurse came right away and washed her mother one last time, which meant a lot to Krall. Team members came to the funeral and followed up with phone calls, letters and offers to visit.

“I can’t imagine going through it without them,” Krall said. “I often hear people say, ‘Oh we’re not ready for that yet,’ as if calling hospice is like putting someone to death. It’s not.”

It will take a paradigm shift for patients and their health care providers to make hospice a more comfortable word in our vocabulary, Miller said.

“Culturally, we shy away from the dying process. Even many doctors and health care professionals don’t have the schooling to comfortably talk about the end of life process,’’ Miller said. “Our focus is on the cure and by saying we haven’t met that cure and it’s time to look at other options, that’s challenging because that’s not how we’ve been taught medicine.”

Medkeff-Rose said he believes death should be prepared for with the same attention given to birth.

“We go to birthing classes and get the nursery ready. Why don’t we get ready for death that way?’’ he said. “The answer is because it hurts so much emotionally, but it’s important to do because we learn and make meaning of this hurt, which helps us begin to heal.”

For the patient on hospice, having a nurse who coordinates care with the doctor and who is always on call makes things much easier, Miller said.

“Often times the patient who isn’t on hospice ends up going to the emergency room and having an intense medical experience rather than having the peaceful experience of being at home with family,” she said.

Choosing a hospice provider

When it comes to selecting a hospice provider for yourself or a loved one, don’t be afraid to ask questions to make sure you choose the one that’s best for your situation. Some questions to ask:

– Does the hospice serve your area?

– How long has the hospice been in operation?

– Is the hospice certified by Medicare? What other types of insurance are accepted?

– What services does the hospice provide?

– How quickly can I get enrolled in your hospice service?

– How many times per week does hospice staff make home visits?

– Are your aides certified nursing assistants?

– Do you have night/weekend hospice on-call coverage?

– Is participation in care by a family caregiver required for hospice enrollment?

– What is expected from the family caregiver?

– To what degree are volunteer services available in the home?

– What, if any, out-of-pocket charges can we anticipate? For what services?

– Does the hospice have contracts with local long-term-care facilities?

– Does the hospice have an inpatient facility?

– What bereavement services are provided and for how long?

SOURCES: Hospice Foundation of America, AseraCare Hospice


Hospice providers

Below are some midstate hospice providers. For more options, the Pennsylvania Hospice Network offers a listing of local hospices on its website, www.pahospice.org.

Good Samaritan Hospice
202 Hathaway Park
Lebanon, PA 17042
Phone: 717-270-7672
Fax: 717-270-7982
Website: www.gshleb.org

Hospice of Central Pennsylvania
1320 Linglestown Road
Harrisburg, PA 17110
Phone: 717-732-1000
Website: www.hospiceofcentralpa.org

Homeland Hospice
2300 Vartan Way, Suite 115
Harrisburg, PA 17110
Phone: 717-221-7890
Fax: 717-221-7891
Website: www.homelandcenter.org/hospice

Celtic Healthcare
150 Scharberry Lane
Mars, PA 16046
(provides services in Lebanon County and other areas in the midstate)
Phone: 800-355-8894
Fax: 800-931-4288
Website: www.celtichealthcare.com

AseraCare Hospice
315 Primrose Lane, Suite 101
Mountville, PA 17554
Phone: 717-228-2775 or 1-888-262-8545
Fax: 717-285-7761
Website: www.aseracare.com

Compassionate Care Hospice
1513 Cedar Cliff Drive, Suite 100
Camp Hill, PA 17011
Phone: 717-944-4466 or 1-800-777-5109
Fax: 717-944-4497
Website: www.cchnet.net

Hospice of Lancaster
685 Good Drive
Lancaster, PA 17604
Phone: 717-391-2421
Fax: 717-391-2404
Website: www.hospiceoflancaster.org