We often go to the doctor when we’re sick and want to get better. But not always. Especially toward the end of life — or the end of a loved one’s life — you may seek medical care not to cure ailments but to keep you comfortable. This is hospice.
What Is Hospice Care?
“The role of hospice is to help ensure the patient remains as comfortable as possible and their symptoms are managed through the end of their life,” says Corrie Bly, a registered nurse and the director of Home Health at AIM & Hospice Redlands Community Hospital in Redlands, California.
She adds, “I like to focus on how to make the patient’s final days comfortable and a positive experience for them and their family. The patient and family know the expected outcome — we help them focus on how to have good days together.”
Hospice providers don’t perform actions to speed up the dying process, but they don’t intervene with life-saving interventions to stop death from happening either. According to Medicare.gov, comfortable medical interventions can include:
— Pain management medication like morphine to ease you or your loved one’s symptoms.
— Physical and occupational therapy services
— Social services
— Dietary counseling
— Spiritual or grief counseling services
“Inevitably talking about hospice is a discussion about dying,” says Dr. Brian D. Madden, a primary care physician and the medical director of palliative care at Providence Saint John’s Health Center in Santa Monica, California. “Hospice becomes part of how to live out the final days, weeks, months or even years, in some rare cases. In most cases, it can enable patients to remain at home, focusing on living or, when inevitable, dying with comfort.”
Depending on your or your loved one’s needs — and your hospice provider’s bandwidth — you may visit your hospice provider, or they may come to you. Providers do not typically offer 24/7 support or serve as home health aides, but they should be available for unplanned emergencies, Madden says.
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Are You Ready for Hospice? Questions to Ask Yourself
To know if you or a loved one is ready for hospice, take some time to think through the state of your health and the gravity of your decision.
To qualify for hospice care covered by insurance, you have to be experiencing a terminal condition. The Medicare Hospice Benefit, which is accepted by many hospice providers in the U.S., covers hospice care for people who are certified as having six months or less to live by a medical doctor. However, people can be on hospice for longer than this.
Second, it’s important to emotionally prepare for the outcome of dying if and when it comes. Being in hospice means that your provider will not provide life-saving interventions in crisis, which can be hard for some patients and loved ones to come to terms with.
“I do prefer to ensure patients and families understand that hospice, while not trying to hasten death, does not avoid it when the clinical scenario deteriorates,” Madden says.
When discussing the possibility of hospice, he encourages patients and families to ask themselves whether they are focused on a goal of allowing death in the first place.
“Sometimes the expectations are that hospice will be checking labs, providing IVs, which is typically not the case,” Madden says. “While every circumstance is different, being ready to discuss tradeoffs and priorities is crucial. Is it more important to stay at home or stay alive longer but risk dying in the hospital? This is often a very important question.”
In addition to certifying that you are terminally ill, Medicare requires you accept comfort care (palliative care) instead of care to cure your illness and sign a statement affirming your decision to undergo hospice care.
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Ready to Pursue Hospice? Questions to Ask Your Hospice Provider
After deciding you are ready to pursue hospice, you will want to be thoughtful about which provider you choose. The good news is you have options. According to the most recent data from the Centers for Disease Control and Prevention, there were 5,200 hospice care agencies and 1.5 million hospice patients in the United States in 2020.
To make sure your provider offers high-quality care, here are some questions to ask to help guide your decision. Some of these questions you may be able to research on your own, whereas others can be asked directly to the provider.
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Is this hospice regulated and Medicare-certified?
This means the hospice offers (at least) the basic services covered by Medicare.
According to Medicare.gov, hospice plans should cover the following services — depending on your individual care requirements:
— Doctor, nursing and medical services
— Durable medical equipment for pain relief and symptom management
— Medical supplies, like bandages or catheters
— Drugs for pain and symptom management
— Short-term inpatient care for pain and symptom management
— Support services such as social services, physical and occupational therapy, speech-language pathology, and aide and homemaker services
— Dietary counseling.
— Spiritual and grief counseling for you and your family
— Inpatient respite care, up to five days at a time
Your hospice team may recommend other services that Medicare covers to manage your pain or symptoms related to a terminal illness or related condition.
What is this hospice’s Medicare star rating?
This is a one- to five-star rating on the quality of the hospice’s service. A five-star rating is the highest rating.
These ratings are based on a survey by the Consumer Assessment of Healthcare Providers and Systems, or CAHPS, hospice survey. CAHPS collects information from family caregivers about their thoughts on hospice care and includes information on what they call six “domains” and two “global measures” of care.
The six domains of hospice care include views on the hospice’s quality of:
— Communication with family
— Providing timely help
— Treating patients with respect
— Emotional and spiritual support
— Helping with pain and symptoms
— Training family to care for patient
The two global measures of hospice care include the survey participants’:
— Rating of the hospice
— Willingness to recommend the hospice
You can look up a hospice’s star rating through Medicare here.
Is this hospice connected to a larger hospital or medical system?
It’s a good thing if a hospice integrates with an existing medical system or hospital, so information can be conveyed easily from the prior team to hospice, Madden says.
Does this hospice have a good reputation in its area?
Bly recommends reading “reviews from other families to get an understanding of how well the program supported them.” You can also check out reviews on websites like Nextdoor (a social app for neighborhoods, where you can get local tips and recommendations), Madden adds.
Is the hospice staff respectful?
Checking ratings, talking to people you know and reading reviews are some ways to check in on if the staff is respectful.
You may also be able to get a sense of their attitude by talking to representatives on the phone — but not always. Madden says that because of hospice’s entanglement with insurance providers, the person you talk to on the phone to sign up with is unlikely the person who will be providing care to you.
“It can be an unfortunate experience, but these people are not the clinical staff who will ultimately be providing the care, and it is important to consider that,” he adds.
If the hospice is associated with a general inpatient unit, it may also be possible to visit beforehand. However, rules can vary from place to place, and not all hospice services are attached to a physical location, so site visits are not always possible, Bly says.
Are hospice staff competent?
Asking questions, checking staff credentials and reading reviews can help you get an idea of the competency of the staff.
How long is your commute to a hospice program or your providers’ commute to you?
Since hospice will be a big part of your life and death, proximity is important. This may sound confusing because, unlike a hospital, hospice is not a “location,” nor a 24-hour residential support program, Madden says. Instead, hospice can be provided through several means, such as programs at a hospital, nursing home or assisted living facilities, or in a person’s home.
Whatever the case, keeping a close distance between you and the people serving you can decrease the time it takes for you to connect with support when needed. Being close to loved ones can also make it easier for them to visit and support you through this time.
Is this hospice experiencing any staffing issues or shortages?
Hospice that is short-staffed may be less capable of responding to your needs and emergencies than one that is well-staffed. But what qualifies, or quantifies, as well-staffed can vary per agency.
“Hospice does not have staffing ratios like a hospital would, so there is no published benchmark to compare to,” Bly says.
She adds that hospice nurses may be able to take on more cases in urban settings, where patients live closer together, than in rural settings where people live farther apart.
Rather than play a numbers game, she says a good way to understand if a hospice has enough staff to meet patients’ needs is to ask questions like:
— What is the hospice’s response time to their farthest service area?
— How long does it take a patient to get help during the day?
— How long does it take a patient to get help at night, on the weekends or holidays?
— What is the average caseload for an RN case manager?
— Are the daytime nurses on call after hours, or does the hospice assign separate after-hours shifts?
Are hospice providers capable of making unscheduled visits?
In a preliminary conversation, Madden suggests asking a provider, “‘What would you do if there was an urgent issue?'”
“You should feel confident in the triage process and their capacity to make unscheduled visits,” he says.
What kinds of ancillary services does this hospice offer?
Some hospices offer services like art or music therapy, pet visits and acupuncture, Madden says. These can be appealing to some patients and can be nice additions to the program.
However, he warns to be wary of hospices that offer material benefits — like promises of flat-screen TVs and additional medical supplies — as these can be “fraud abounding,” Madden says. In recent years, some hospices have been exposed as using material benefits to lure people into hospice, even if they had more than six months to live. In California, where Madden is based, he says that loose regulations on hospice care “have led to an increase in the number of hospice agencies and unscrupulous providers” offering hospice care to unqualified people.
How to Choose a Hospice Provider
Bly recommends taking time to write down some questions of your own — and thinking about your goals. Do the providers you are looking at offer services that align with your goals?
“Learning that a loved one needs hospice care can be overwhelming,” Bly says. “It’s important that the hospice provider be knowledgeable, flexible and calm. It’s also important for the hospice provider to be an active listener and include the patient and family in planning the patient’s care.”
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How to Choose a Hospice Provider and Questions to Ask originally appeared on usnews.com
Update 09/05/24: This story was previously published at an earlier date and has been updated with new information.
