Cultivating Continued Care options

Nurse Michelle Wood adjusts the hat on a patient at the center.

By: Joleene Moody
~NNY Business writer Jen Jackson contributed to this story.

For many, the thought of choosing hospice as a means of end-of-life care sends a message of uncertainty and confusion, especially when family members are not sure exactly what kind of care hospice service offers. Family members seeking help might avoid reaching out thinking they can’t afford it or that it might not be the right fit for their family member.

The truth of the matter is that hospice isn’t just about caring for those who are near the end of their lives. It’s about enhancing the time they have left so they can leave this world with dignity and in peace.

                Diana Woodhouse, the CEO of Hospice of Jefferson County said, “Our families tell us they can feel the compassion and appreciate the honesty we have with them. This compassion builds a certain level of trust and rapport with the family. While we help them prepare for the death of their loved one, we also help the patient focus on the remainder of his or her life, making the best of the time they have left.”

How Hospice Works

                Part of supporting the family in need is helping them understand how the cost of hospice works. According to Nicole Paratore, director of community relations at Hospice of Jefferson County, roughly 60 percent of their reimbursements come from Medicare. Medicaid, third party insurance, and private pay make up the difference if there is a shortfall.

                For families unsure whether or not they qualify for Medicare, part of the work done by hospice is helping them complete the necessary paperwork. To be eligible for hospice under Medicare benefits, the patient must have a physician tell them they have less than six months to live.

                For patients who don’t have any insurance or money to pay out of pocket, hospice will work with the family financially or offer open services in some cases.

                “We never turn down a patient because of their lack of ability to pay,” Ms. Woodhouse said. “So we do provide charity care when needed. What hospice actually pays out isn’t fully covered by our reimbursements, so we have fundraisers to help us cover any additional costs.”

                According to Kellie Hitchman, director of development and community relations at Hospice and Palliative Care of St. Lawrence Valley in Potsdam, many people avoid reaching out to hospice because not only do they want to sidestep the emotional impact of losing their loved one, they don’t fully understand what hospice care is or what it offers.

                “The greatest misunderstanding we see is when family members don’t know the services we offer,” she said. “One of the things I hear a lot is, ‘I wish we had called sooner.’ For a lot of families, this is a scary time. They think they’re giving up hope, but that isn’t true at all. They’re simply seeking help.”


The Risk of Waiting

                In May, the United Hospital Fund and the Alliance for Home Health Quality and Innovation found that patients who refused home care services, like those offered by hospice, once discharged from inpatient care have higher rates of hospital readmission and a lower quality of life.

                The report, “I Can Take Care of Myself!”: Patients’ Refusals of Home Health Care Services, includes a limited study of 495 patients in New York City and Philadelphia eligible for home care.  According to researcher Kathyrn Bowles, PhD, of the Visiting Nurse Service of New York and the University of Pennsylvania, 28 percent of those patients refused services.

                Patients who refused home care were twice as likely to be readmitted to the hospital within 30 to 60 days – an indicator of not just lower quality of life, but of higher healthcare costs overall.

                According to the study, there are many reasons patients may wait to enter hospice or refuse home care. The most common reasons cited by the patients themselves are they are managing fine at the moment or see it as an invasion of privacy, they don’t think they need help or have had bad experiences in the past, they don’t know enough about the services or the costs, and fear of the unknown.

                Other barriers to end-of-life care the report found include misunderstandings on the part of family members, stories of abuse or neglect in the media, and undiagnosed or misattributed dementia or cognitive impairment.

                Hospitals themselves may also lack information on “post-discharge services” or options for patients leaving inpatient care.

                “We see this over and over again. The person the patient trusts to give information in real time is the physician. But someone else may play that role,” President of the Medicare Rights Center Joe Baker said in the report. “Increasingly, it’s someone with the ability and title and the training to do it.”

Services Offered

                Many patients want to live out the remainder of their lives at home. In these cases, hospice offers at-home care. If this is what the patient chooses, a family member or friend must be designated as the primary caregiver. Registered nurses then teach that particular family member how to turn a patient, administer medications, and give instructions for other clinical needs. They are also on call to answer any questions.

                For those who would rather be in a hospital setting for care, Hospice of Jefferson County has an in-house residence. At the residence, Medicaid or commercial insurance often covers room and board, which includes laundry, cooking, and round the clock staffing. Of course, staff nurses are also present to take care of any clinical needs.

                Other patients can receive hospice benefits at nursing homes or area hospitals.

                Outside of this, spiritual and bereavement services are also available.

                So no matter where a family member chooses hospice, how their loved one lives out his or her final days is determined by their needs. It is not a cookie-cutter care plan, but a specialized one that meets the needs of the patient and the family.

                Ms. Hitchman said, “A lot of families out there caring for a loved one might be struggling. We want them to call us. If we can help out, we will. We can share with them the different resources we offer that can make a world of difference. It never hurts to ask questions.”

                For more information in Jefferson County visit or call 315-788-7323. For more information in Saint Lawrence County visit or call 315-265-3105.