The Unknown Truths of Hospice Care

Jamie Goodman
The Groundhog
Published in
6 min readMar 8, 2023

Hospice care is so often equated to surrendering and giving up hope.

Nothing could be further from the truth, according to Sandra (Sandi) Cassese, President & CEO of Hospice of Orange and Sullivan. There is a great deal of misconception surrounding hospice care, but its true intricacies are not well-known by the public.

Cassese, (RN, MSN, and CNS), hopes to change the narrative surrounding hospice care through educating people on what hospice is really about. She came to Hospice of Orange and Sullivan Counties five years ago; “I had a personal experience with hospice that changed my life,” said Cassese.

“My daughter was married when she was 26. They were a young couple. They kind of had this dream thing going on. They got married, they bought a house, they were about to start a family.”

But the unexpected soon transpired. At 29, Cassese’s daughter, Dana Bernson, became a widow.

Her husband was diagnosed with Rhabdomyosarcoma, a rare form of cancer, and enrolled in hospice about six months before he passed away. “The nurse practitioner that was working with them and the nurses through hospice, they really saw him as a person, they saw my daughter as a person,” said Cassese. The hospice stayed in touch with Bernson for 13 months after her husband’s passing, and helped her to find a support group for young widows. Those 13 months were so important to Bernson.

So, when a position at Hospice of Orange and Sullivan Counties became available, Cassese gave careful thought to it. “I was at the point in my career where I said, ‘this is where I feel like I could do the most good,’” said Cassese. She took a substantial pay cut and joined hospice as the COO and soon-to-be CEO.

Cassese sees herself as the “Chief Optimist” as much as she does the Chief Executive Officer. She ensures that morale is intact, works very hard to establish personal relationships with staff, and begins every day with a group huddle. She also keeps the team honest, making sure they are careful and thorough, as the easiest way to get in a lot of trouble in hospice care is through fraud and abuse.

Sandi Cassese, President & CEO of Hospice of Orange and Sullivan. Photo provided by Hospice of Orange and Sullivan.

“I’m really focused on our quality measures,” said Cassese. “Because at the end of the day, to me, that’s really what matters, my two things, the quality measures and the perception of the family and the patient that we’re caring for. Because everybody’s situation is unique. It just is not one size fits all.”

Quality care is informed by the regulation in the hospice realm. Anyone can refer themselves to hospice care, but to get on a program, a physician certifies that in their best estimation, if the disease progresses as expected, the patient has a six months or less prognosis. Cassese’s team spends a lot of time making sure that patients meet all the criteria before they come on the program. The team meets every week and reviews each patient to ensure each is meeting their plan of care.

The main team that makes up hospice care is a physician, RN, LPN, aide, social worker, spiritual care, and volunteers. “I say spiritual, it’s not religion; our spiritual care department, they’re the non-judgmental, listening ears, who just can help people make sense of what their lives meant,” said Casesse. “You know, it’s really important for people to know that they made a difference in this world, and that they’re not going to be forgotten.”

Together, the team figures out what is most important to the patient, and it’s different for everybody. Everything that is related to the person’s terminal diagnosis (emotional, spiritual, physical, etc.), is paid for by the hospice, which takes a lot of pressure off of families. “We do the heavy lifting so that they can truly focus on their loved one, or on themselves, if they’re the patient,” said Cassese.

The team is not in patients’ homes 24 hours per day, as this is not how hospice care works. Most patients are seen each week in their homes by an RN, sometimes two or three times if they are experiencing symptoms. Hospice of Orange and Sullivan does have its own residence (Kaplan Residence), but the majority of patients receive care in their own home. RNs will teach family members ways to further support the patients, such as how to provide medications for a specific symptom.

Kaplan Residence. Image provided by Hospice of Orange and Sullivan.

Many patients have cancer, but many others have heart failure, kidney failure, Alzheimer’s, dementia, ALS, Parkinson’s and other neurological disorders. Occasionally, patients are infants or newborns with congenital issues, who have a short lifespan. “Those are hard,” said Cassese. “That’s mainly the support to the family, to the parents more than anything. And that’s the beautiful thing about hospice, is that we don’t just take care of the patient, we take care of the unit.”

New York, however, is 51st in the nation for utilization of hospice services.

There is a law stating that providers’ physicians must inform patients of all of their options when they’re at a certain point in their illness. This would include hospice care as an option. “We know that’s not happening, because if it were, we wouldn’t be 51st in the nation,” said Cassese. She feels that the incentives are all wrong, given that doctors and providers are incentivized to give expensive care. “I’m not saying that everybody’s unscrupulous,” said Cassese. “I’m just saying, in my opinion, it’s backwards. You should be incentivizing providers on quality instead of on sheer numbers.”

Research has shown repeatedly that people on the hospice program generally outlived their prognosis. “We think it’s because we’re able to do what hospice does really well; we’re able to provide extra layers of support every step of the way,” said Cassese. “And that’s part of the hospice philosophy.”

Despite what some may assume, patients have autonomy and rights. “We do not hasten death. That is not what hospice is,” said Cassese. She feels as though patients are disillusioned by the healthcare system. “People really believe in the healthcare system and have hope, and very often, they are given false hope.” Cassese has seen healthcare providers offer options that may not be realistic.

“I think there’s a lot of unnecessary pain and suffering that happens at the end of life that doesn’t need to happen,” said Cassese. “The hospital is not really the place for someone to go and die. That’s not what hospitals are designed for.” She added that when asked what is important to them, almost all of the hospice’s patients just say that they do not want to die in pain and don’t want to die in the hospital.

Another unknown of hospice care is how those on hospice teams emotionally deal with their work. “I’ve been a nurse for a very long time, and in my career, I think I’ve pretty much seen everything that there is to see, but that doesn’t make it any less poignant or emotionally charged when you’re dealing with death all day,” said Casesse.

But her faith in her team helps Cassese continue moving forward. For me, the satisfaction of knowing that my team is doing whatever it takes…anything that they can possibly do to help that person on this journey at the end, it’s really comforting to me. I hear the stories. I’ve talked to families who were just unbelievably grateful.”

Self care and the knowledge that she is encouraging everyone, herself included, not to cut corners and to do things right the first time, helps Casesse to maintain a work-life balance. “I have to say, I go to sleep with a clean conscience and a very happy heart,” said Cassese. “Because I know that we’re scrupulous. And there’s something to be said about that, to have a good, clear conscience, it’s incredibly, incredibly rewarding to me to know that people trust us in the most difficult time.”

While hospice work is a challenge every single day, much of it is extremely gratifying for those who spend their time comforting patients in their final days.

“With those last moments in life, it’s kind of like when somebody has a newborn baby,” said Cassese. “They never forget the nurse that was in the delivery room with them, or the nurse that provided postnatal care. For us, I think it’s the same sort of privilege, to be able to help people transition peacefully from this earth.”

--

--