Formerly known as Hospice of Redmond. Same nonprofit, helping more people.
What Most People Get Wrong About Hospice
Many of the families Kat talks with say some version of the same thing. They wish they had begun hospice earlier.
Kathline (Kat) Crawford has heard it for years. In her role as ClearPath Healthcare’s bereavement coordinator, she is often the first person a family talks to after their loved one has passed. She says a feeling of regret sometimes comes up on its own, without anyone asking. Families are grateful for the care they received. They just wish they’d started sooner.
So we sat down with Kat and Kelly Cusumano, RN, BSN, our director of clinical services, and asked them a simple question. Why do families wait, and what would they want people to know before they find themselves in a similar situation? Their answers are below, in their own words.
Hospice Is Not Only for the Last Few Days
Many people picture hospice as something that begins once a person is bedbound, or in the final days or hours of their life, and so they hold off until things are undeniable.
Kelly gives a different explanation.
“According to the Medicare rules, hospice care is available to anyone whose doctor thinks that they have six months or less to live should their illness follow its normal course.”
This is a prediction, not a description of their current condition. A person may be eligible for hospice even if they are still living a full and active life.
“You can be on hospice and still be golfing,” Kat says, “or driving yourself to your appointments.”
Kat remembers one patient who went to a music concert on the very day they came onto service and accepted nursing support. Timelines are unpredictable. Some patients, the ones Kat calls “hummingbird patients,” arrive and pass within days. Others experience a slow decline and remain on hospice for a year or longer, with their eligibility reviewed along the way. Hospice does not shorten the road someone is on. It changes how the road is traveled.
Choosing Hospice Is Not Giving Up
Many people believe that hospice is giving up.
Kelly offers a different perspective.
“Giving up, she says, is when options are available, and nothing is chosen. Hospice is a choice. It is the decision to put comfort, dignity, and time with the people you love at the center of care. The goal shifts from adding days to making the days that remain as good as possible.”
Kelly Cusumano, RN, BSN
For Kat and Kelly, hospice means quality of life until the last breath.
A Nurse Once a Week Is Not What Hospice Looks Like at ClearPath
Some families arrive expecting what they saw at another hospice, sometimes in another state, where a nurse came once a week, and that was it. Hospice involves much more than a nurse visiting a person’s home once a week.
As Kelly puts it, a typical week is centered on the patient. Care starts with an admission visit involving both a nurse and a social worker, who determine what the patient and their family need and set the visit schedule accordingly. Each case is tailored to the individual. Hospice aides may come once or twice a week, depending on the person and the support they need at home, to help with bathing, hygiene, and personal care. Nurses visit on a schedule that suits the patient’s condition, and the nursing team is on call 24 hours a day, seven days a week, with a nurse calling back promptly.
There’s also a wide range of other services available outside of nursing care. Chaplains can assist patients with their spiritual concerns, fears, and any unfinished matters. Social workers work to remove obstacles, help families understand how to use Veterans Affairs benefits, arrange home-based care, address financial issues, and help family members access paid leave so they can be with their loved ones. Volunteers are available to spend time with patients, work on puzzles, play music, and provide company. Other options for patients include visits from massage therapists, mobile hairdressers, and pet therapy. Veteran volunteers sit with veteran patients, including those living with post-traumatic stress, because some conversations only happen between two people who have both served. We also offer veteran pinning ceremonies and other veteran-specific services through our Serving Those who Served program.
Hospice Does Not Take Away Your Treatments or Your Doctor
Families often assume that enrolling in hospice means everything stops. But that is not the case. Things like oxygen, tube feeding, insulin, and all other necessary treatments are still given. What changes is the question the team asks about each one: is it helping, and is it worth what it asks of the patient? The team makes these decisions jointly with the patient and the family, not on their behalf.
This applies to medicine too. Families sometimes worry about morphine and similar medications, and whether they hasten the end.
“When given in the correct dose, these medications relieve pain and shortness of breath, and that is their only function,” said Kelly. “The aim is comfort.”
Your regular doctor does not disappear either. When someone enrolls, ClearPath notifies their primary care physician, and that doctor can choose to stay actively involved or remain informed through the care team’s notes, which go out every two weeks. Many physicians are glad to lean on the hospice team as the end-of-life specialists while remaining part of the picture.
Hospice Is Not a One-Way Door
One thing that often surprises patients and their families is that they can come off hospice. If someone decides to pursue curative treatment again, they can revoke the hospice benefit, get that treatment, and return to hospice later if they still meet the criteria. Kelly has seen it happen with patients managing chronic lung disease who wanted another round of respiratory care. ClearPath lets the primary care physician know, and for patients who still need support in the meantime, ClearPath’s Transitions program is available.
Hospice Is Not Something You Have to Wait for a Doctor to Bring Up
Kelly says one of the biggest gaps in health care is education about the end of life. Many families wait for a physician to raise the subject, and some physicians delay the conversation too. Bringing up the end of one’s life is difficult.
You do not need a referral to call ClearPath. Families can contact ClearPath directly, ask questions, and get guidance long before anyone is ready to enroll. If hospice is not the right fit yet, Transitions can offer support in the meantime. A phone call is about gathering information, not committing. Kelly shared that she often hears the sigh of relief when a family member has their questions and concerns addressed on the first phone call.
Once a family and physician agree it is time, the process moves quickly. ClearPath gathers medical records, obtains medical director approval, and schedules admission, often within 48 hours or sooner if the need is urgent. A nurse and social worker come to wherever the patient calls home for the first visit. The team checks in with the family over the next two days to answer the questions that often arise.
The Signs Families Can Watch For
Kelly shared some early changes that often signal it may be time to start the conversation about hospice. She said that appetite decreases, and sleep increases. For many, memory begins to slip, and falls become more frequent. Continence also changes. None of these means hospice is required today, but together they are a reason to call and ask questions.
One change families find hardest is when a loved one stops wanting food or water. Kelly explains that as the body begins to shut down, it can no longer process food and fluids as it had before. Hospice nurses help families understand what is happening so they can show love in ways that bring comfort rather than distress.
What Hospice Costs
For most families, hospice care is typically covered in full through the Medicare hospice benefit, Medicaid, or private insurance, with little or no out-of-pocket cost for services related to the hospice diagnosis. That includes nursing visits, medications, equipment, and support from the full team. ClearPath is a nonprofit, and no one is turned away because of an inability to pay. Kelly notes that the only things families typically cover on their own fall outside the scope of hospice, such as vision and dental care.
What Delaying Hospice Costs
Kat describes what families miss when hospice begins with only days left. The clinical team never gets the chance to become “part of the family.” There is no time for a chaplain to sit with a patient’s questions, or for a social worker to lift the burdens that have been piling up for months. The nurses feel it too. In team meetings, Kat says they often verbalize how they wish they had been given more time with a patient.
When families connect with hospice earlier, the same team visits week after week and genuine relationships are established. This is especially beneficial for patients with small families, those estranged from their families, or those who live far away.
At the beginning of this blog, we mentioned a feeling of regret some family members voice after their loved one has passed. Regret is understandable. There are a lot of emotions that come when we lose a loved one. But regret, Kat says, takes up heart space that should be holding love. Her wish for the families she has not met yet is simple. Do not wait until you are certain it is time. Call, let the team come out, ask every question you have, and make an informed decision about what quality of life looks like for the person you love.
If You Are Wondering Whether It Is Time
You don’t need to be certain that now is the time to call. ClearPath Healthcare has cared for Central Oregon families since 1979, in Redmond, Bend, Sisters, Prineville, Madras, and the communities in between. The first conversation is only ever a conversation.
