November is National Hospice and Palliative Care Awareness Month. If you or a loved one in your life is considering hospice or palliative care, it’s important to know the differences between the two, and to have the right information regarding your options. In order to empower you and arm you with the knowledge you need, we spoke with Cheryl Johnson, Executive Director of Weinstein Hospice.
With Cheryl’s help, we at AgeWell Atlanta break down some of the most common myths about hospice care. Keep reading to find out more!
Myth: It’s always obvious when to go into hospice.
It’s common for people to believe that the signs of needing hospice are glaringly obvious. But Cheryl said that’s not always the case, and there are some symptoms that people don’t think about that could mean it’s time to consider hospice.
Some of the symptoms that indicate a potential need for hospice include: Safety concerns regarding erratic or easily agitated behavior, risk of falling due to unsteady movements, a lot of weight loss in a short period of time, poor appetite, more than a couple of hospitalizations over a six month time period, and significant weight loss.
“One of the biggest things people don’t always know is how much care their loved ones really need,” Cheryl explained. “That, or people are understandably not always confident the changes they’re seeing are pointing towards the end of life. It’s always better to err on the side of caution. If you are unsure, talk to somebody about the changes you are seeing. Then, you can be informed and know what to look for, and when to switch gears and prepare.”
Myth: Once you choose hospice, there’s no going back.
Cheryl said many family members or those in hospice care get cold feet and decide it isn’t what they want to do. But they often feel trapped, thinking that once they’ve started, they can’t go back and try curative measures. Cheryl wants to reassure people that they are not “stuck” in hospice care, and that especially with Weinstein Hospice, there is room for some flexibility.
“You are not locked in to hospice,” Cheryl said. “Understandably, people may want to change their minds and try to resolve certain health problems, and that’s ok. Families are not penalized if insurance companies see multiple discharges and readmissions for any given patient.”
“When families feel uncertain about the best course of action for their loved one, I encourage them to speak with the hospice team or other trusted person,” Cheryl said. “I encourage them to think through the goals of care and the best way to achieve those goals. Sometimes, those plans may not include hospice, but could include palliative care. It’s all about finding the pathway that meets your needs and goals.
Cheryl added that if families wish to continue more curative-based interventions, but lean towards comfort measures, palliative care might be the better path. Being enrolled in a palliative program allows individuals to continue to treatment such as chemotherapy and radiation, while also receiving medical oversight from a nurse practitioner or other medical personnel. This medical professional will guide the family on their decision making processes to ensure the goals of care are being met. Then, when the patient/family is ready for hospice care, the palliative care team can assist with that transition.
Cheryl said Weinstein Hospice provides pre-admission consultations to every family to help them decide if hospice care is right for them, and to ensure that the family has a clear understanding of the expectations and resources available.
Myth: Hospice is a place you take your loved one to.
When somebody enters hospice care, it’s often worded as “We are admitting [name] into hospice.” This can lead people to believe that hospice care is a physical place you take a loved one to, such as a special facility. And while places like that still exist, Cheryl says they are very rare.
“Hospice is generally not a place,” Cheryl explained. “There used to be more hospice inpatient units, but most have closed because it’s financially difficult to maintain them. Even with ones that are still around, they are designed to bring people in for symptom management, not as a residential stay for custodial, day-to-day care.”
“So if someone is looking for a place to live, too, it’s very expensive and most likely an out-of-pocket cost,” Cheryl continued. “People assume insurance will cover an indefinite stay but that’s generally not the case.”
Myth: You have to make a decision about hospice quickly.
Cheryl said that choosing hospice is one of the most important decisions a family member will ever make, and that they do not need to rush their decision despite common pressures.
“Families are often shuffled around and pressured to choose a hospice because they don’t know they have options,” Cheryl said. “We often see this during a hospital discharge. Hospitals are often in a hurry to discharge patients and will tell families to go with the hospice they recommend but not offer other choices. In the midst of the hustle and bustle, what families do, only to find out later, they may have made a different decision had they known there were other providers to choose from.”
She added that Weinstein Hospice is here to help those of all different backgrounds seeking hospice care, and offers compassion, patience, and knowledge during the process.
“People always have a choice, and we are here to help people of all backgrounds. Weinstein Hospice was born from the Jewish community to serve the entire greater Atlanta community,” Cheryl said. “You should never feel rushed into making a hospice decision. It’s one of the biggest decisions you will ever make, and we want to help you decide what is best for your family member.”
Four-Part Free Webinar on Hospice and Palliative Care
Still seeking more knowledge? You’re in luck! Weinstein Hospice has put together a free, four-part webinar series focused around hospice and palliative care! Below are the months and subjects that will be covered:
- November: Widow Wisdom
- January: Ethical Wills
- March: Myths and Facts About Hospice and Palliative Care
- May: Navigating Social Media and Other Critical Documents After a Loss
If you’re looking for the exact dates, be sure to subscribe to the AgeWell Atlanta newsletter and be one of the first people to receive them, along with other fun and educational events in the area and more blogs like this one. You can do that by clicking here.