5 Questions You NEED to Ask Before Enrolling in Hospice

If you’re starting to look into Hospice care, you may be feeling overwhelmed and emotionally exhausted. You’ve probably got a lot on your plate already, you may not know what you’re looking for, or what questions to ask.

We got you!

Here are 5 not so obvious questions you NEED to ask before enrolling with a hospice agency. 

1. Who’s part of my hospice team and who’s going to be checking in on us?

The team usually consists of a hospice physician or medical director, nurses, social workers, trained volunteers, clergy or other counselors, home health aides, and speech, physical, and occupational therapists work together to provide hospice care. 

A person’s primary care often serves as one of the physicians certifying that the patient meets Hospice Eligibility Criteria. The primary care provider can continue to be involved in patient care and collaborate with the hospice team to manage pain and non-pain symptoms depending on their comfort level and the policies of the hospice agency.

💡That said, typically the hospice nurse will visit the home to assess your person and develop a care plan. You’ll want to ask how often the nurse will be visiting the home and how you can access the support of other team members like the social worker or chaplain.

2. Are there treatments the person is currently receiving that they can’t have in hospice?

When your person enrolls in hospice, the medical team will review the current medications and treatments and decide which to continue and which to stop. 

Typically they will:

• continue or add medications to manage common symptoms at the end of life, like pain, nausea, or breathlessness 
• stop any treatments, like chemotherapy, that no longer align with the goals of comfort and allowing a natural passing at the end of life. 

That said, some hospices, often larger ones, may be able to continue specific treatments that help manage symptoms at the end of life and perhaps also prolong life. 

💡 For example, some hospices offer carve-outs that’ll enable someone to receive radiation, a continuation of oral immunotherapy, or transfusions if they’ll help manage symptoms like pain, nausea, or shortness of breath. These carve-outs may be available for a limited period.

3. What happens on nights, weekends, and holidays if I need help or if there’s an emergency?

The majority of hospice care is provided at home. So it’s essential to know who to call if you’re having a crisis at 3 am on a Sunday over Memorial Day weekend.

💡You will have access to a 24/7 hotline where a nurse can help manage the crisis over the phone, but make sure to ask if the hospice can send a nurse or someone to help in person if needed. 

4. How can an exhausted caregiver get respite care?

In the last months, the caregiving responsibilities can become more intense, emotionally draining, and physically exhausting. There’s only so much you, your friends, and your family can do and only so much money you can invest in hired help. 

Respite Care allows you to take a short-term much-needed break! You can get up to 5 days of respite care at a Medicare-certified hospice facility, “on an occasional basis”, with unlimited stays paid for by Medicare! 

During these 5 days, the person in hospice will be cared for 24/7 by healthcare professionals. You can take 5 days off or break it up as you wish. That way, you can take a much-needed vacation or even a weekend off!

💡You’ll want to know where they offer respite care, whether the respite facility is certified by Medicare, and how to schedule a respite stay.

5. What happens if things get too hard to manage at home?

Most hospice care is provided in the home setting – in a private house or apartment, assisted living facility, or nursing home. Family, friends, or hired help are responsible for the day-to-day caregiving.

You will work closely with a hospice nurse who performs an initial evaluation, creates a care plan based on the needs, and coordinates visits by the other interdisciplinary team members as needed. You’ll also have access to an on-call hospice nurse 24/7. 

However, if the person on hospice is experiencing uncontrolled pain or other symptoms that are not effectively managed at home, when there are psychosocial concerns such as an unsafe home environment, or when death is imminent and the family can no longer provide the type of care needed, your person may be able to receive an intensive form of hospice care called inpatient hospice. 

Inpatient hospice is typically provided in a hospice house, hospital, or nursing home that contracts with a local hospice agency. In this case, healthcare professionals will be the primary caregivers responsible for managing pain, nausea, vomiting, breathlessness, and other symptoms.

💡If your person needs more attentive care, you’ll want to know where inpatient hospice is offered.  Is it offered at a local nursing home, a community hospital, or a hospice house? 

Bottom Line:

Hospice care is an excellent option for someone in the last months of life looking to focus on relief of symptoms and optimizing the time left. This period will be exhausting and overwhelming, so ask these 5 questions to help you feel more informed and confident. 

Now I want to hear from you!

Which of these questions did you find most helpful? Let me know in the comments below

And if you have more questions about when hospice care could be helpful, sign up for a FREE discovery call!

Ashwini Bapat, MD is a board-certified Palliative Care and Hospice Physician, coach, and co-founder of EpioneMD. She completed her Internal Medicine Residency and Hospice & Palliative Medicine Fellowship at Yale University, before working at Massachusetts General Hospital and Harvard Medical School. As a coach, she’s devoted to empowering caregivers so that they’re seen, heard, and supported.