Demystifying Hospice Care: Providing Comfort, Dignity, and Support at the End of Life
January 23, 2024
Hospice care can be hard to talk about. Many of us might not be familiar with it, and those of us who are familiar with it tend to associate it with impending loss. It’s true that hospice care is offered to those who are thought to be nearing the end of life; but when we start to peel back the layers of what’s involved in hospice, we realize it’s so much more than that. At its very core, hospice care is about upholding the dignity of our loved ones who are facing the end of life and supporting their families.
Hospice care brings comfort, peace, improved quality of life, and closure to those with terminal illnesses who are no longer responding to curative treatment—and their families. It’s a shift in the philosophy of care, from curative to comfort-based. Unfortunately, widespread misunderstanding of its nature stands in the way of people getting the care they need.
We recently spoke with individuals from two of our hospice partners—David Allen, Patient Relations Manager at Serenity Hospice, and Kelly Scottoline, Hospice Care Consultant at Compassus—to gain a deeper understanding of what hospice is all about, dispel some of the myths that surround it, and address the questions many of us want answered but may be unsure how to ask.
Myths about Hospice Care
Myth #1 Hospice care is somewhere you go.
This is a common misconception, as in the 1980s hospice care was in fact a place individuals would go to live out the remainder of their lives after receiving a terminal diagnosis. These days, patients can receive hospice care just about anywhere they are living—at home, in a personal care or nursing home, or in the hospital.
Myth # 2 Those receiving hospice care are in the final throes of life.
Mr. Allen describes how families arrive at the decision to begin hospice care. “Usually, after having exhausted every option of curative treatment available, a doctor will suggest to the patient and his or her family, ‘I don’t think a cure is possible. Perhaps we turn our attention to making them comfortable instead.’” This shift doesn’t necessarily mean that death is imminent; rather, it takes into consideration how the patient may wish to spend the time they have left: free from pain, anxiety, and undergoing various tests and treatments.
While a doctor must determine the patient is within a 6-month window of the end of life to begin hospice, some patients actually thrive on hospice care and graduate. “This is thought to be due to a few reasons,” Mr. Allen explains. “The patient is getting more one-on-one time with caregivers and he or she is simply feeling better while receiving care that’s focused on comfort.”
It’s also important to note that there’s no end to hospice care. If six months come and go, the patient will need to be recertified to continue hospice, but this is usually handled by the patient’s doctor and social worker.
Myth # 3 You’re giving up on your loved one by starting hospice care.
On the contrary, you are giving them the most selfless gift you can give—not just freedom from pain and relief from anxiety, but also:
- Care when and how they need it. As Mr. Allen explains, those receiving hospice care at Serenity have a dedicated aide for a minimum number of days and hours each week. Because it is the same aid every day, he or she can give care at a pace that is most comfortable to the patient while becoming particularly adept at spotting any changes in the patient’s status. “Hospice operates 24/7,” says Mr. Allen, “Nurses are available overnight and on weekends and are often called upon during that time.” At Compassus, Ms. Scottoline explains that their “trained clinical team works with each patient and patient’s physician or CRNP to create an individualized plan to provide the highest quality of care.”
- Music therapy. Research has shown music tremendously improves the quality of life of those with terminal illnesses, especially those with dementia.
- Emotional and spiritual care. Perhaps one of the most vital supports offered in hospice care is that of chaplains who offer completely individualized support to patients. No matter where a patient is in terms of spirituality, hospice chaplains provide bedside comfort and address the fears of both the patient and the family.
- Consideration of cultural needs. When appropriate, hospice provides care in a way that respects the cultural beliefs, values, and traditions of the individual.
Mr. Allen cannot emphasize enough what he has seen time and again in his career working in hospice: “The longer a person is on hospice, the better quality of life they have – especially with their family.”
Common Questions about Hospice
How do I know when it’s time to call hospice?
Ms. Scottoline describes some of the physical symptoms a loved one’s treatment team may look for in determining when hospice care is appropriate, which “can include weight loss, increased assistance with activities of daily living, increased sleep, recurrent infections, deteriorating mental abilities, decreased food or drink intake, weakness and fatigue, more frequent trips to the doctor and/or hospitalizations.”
Hospice will likely be recommended by the patient’s doctor or social worker when curative treatments are not working, but family can reach out to a hospice provider at any time—even if it’s just to gather information. “Even if you’re just considering looking into hospice, it’s the right time,” says Mr. Allen.
What is important to think about when deciding on a hospice provider?
Mr. Allen suggests considering the following:
- How many days with an aide are provided?
- What is the availability of the team?
- What are your conversations like with the provider? Do you feel that they will honorably handle what your loved one is going through?
How much does hospice care cost?
For individuals with Medicare and Medicaid, hospice is covered 100% without a co-pay. “Coverage typically includes caregivers, medications, supplies, and equipment related to the hospice diagnosis, with no out-of-pocket expenses to the patient,” explains Ms. Scottoline. Mr. Allen encourages families not to allow concerns over cost to stand in the way of looking into hospice care for their loved ones. Private insurance coverage varies, so check with your provider. Charity cases are sometimes considered, as well.
Will someone be with my loved one as they transition?
This is entirely up to the family and their preference and comfort level. Hospice will have someone bedside for as long or as little as the family wishes. Some families may need a break during this critical time or be separated by distance, and that’s okay. Hospice staff are experienced in recognizing signs that a patient will soon transition and will make every effort to gather the patient’s loved ones at that time—or be there themselves. Compassus Hospice provides daily visits to their patients who are transitioning, as well as end-of-life education and pre-bereavement support to family members. At Serenity Hospice, the Starlight Program is offered in personal care homes and in memory care for patients who are within a 24-hour window of passing. Bedside comfort is provided by hospice staff and clinical services are increased to ensure the patient’s comfort during the transition.
Serenity Hospice and Compassus are proud to work with The Hickman and engage with our residents and staff. If you or a loved one are considering hospice care, you are invited to reach out to them with any questions:
Patient Relations Manager
Personal Cell 215-280-2013
Office/On Call 215-867-3700
Fax 215- 940-9797
Hospice Care Coordinator