Hospice is a wonderful support for families and their loved ones, but one that is often not well understood. Once the decision is made to begin hospice, there can be a great deal of relief, but many questions about how and when care is provided.
Jump ahead to these sections:
- Questions to Ask Hospice Facilities When Looking for Care
- Questions to Ask Hospice Social Workers After a Loved One Starts Hospice
- Questions to Ask Hospice Nurses or Doctors After Hospice Care Has Started
When someone is dying, you want to be available to support them emotionally. You also need to know what hospice can and can’t do so that you can fill in the gaps in care when necessary. Asking as many questions as you have will help keep you calm and focused on the person that matters- your loved one.
Questions to Ask Hospice Facilities When Looking for Care
Most people have hospice at home or in their senior living community. However, other hospice patients opt for a hospice facility, which is a free-standing in-patient residence for people on hospice. Someone may choose this as an option because the family hasn’t been able to provide all of the care at home that someone needs.
However, there are still a lot of questions left to be answered when it comes to even looking or when to start hospice care. Here are some important ones to consider.
1. What will be the cost?
Medicare covers hospice care at home. In a hospice residential facility not all of the costs are covered by Medicare. Ask specifics about what services Medicare pays for and if you are responsible for room and board costs and what those are per day.
Under previous rules, if you have a Medicare Advantage plan and qualify for hospice, your advantage plan reverts back to original Medicare. Changes to that rule might not ensure that your Medicare will fully cover the hospice benefit portion of your stay.
Also, inquire about the costs of any medical equipment not supplied by the facility. Does Medicare cover those costs in the same way they do at home? Who is responsible for ordering additional durable medical equipment?
2. What is the criteria for admission to the hospice facility?
The hospice benefit has certain criteria that must be met for Medicare to cover it. Are the criteria the same for the hospice facility under consideration? Since there will be out-of-pocket costs associated with residential hospice, what are the scheduled payment requirements?
3. How long can my loved one stay?
It is also important to note that a common misunderstanding about hospice is that it provides 24-hour care. It does not, which means that someone has to attend to your loved one’s medical and comfort needs when hospice staff is not there.
Furthermore, with hospice at home or a senior living facility, it is possible to be recertified if the Medicare criteria are still met. Does the same hold true to a hospice facility? What are the conditions where a hospice resident would be discharged? Even though hospice rules are the same regardless of where the service is administered, ask to verify that information.
4. Is general inpatient care (GIP) still an option?
When looking for the best hospice care, it is worth asking about GIP. GIP is a Medicare benefit for patients on hospice whose pain and or other symptoms can’t be managed where they are. The inpatient hospital stay is intended to be short-term until symptoms or discomfort can be controlled. Ask about whether this is still an option when a patient is in a hospice facility.
Questions to Ask Hospice Social Workers After a Loved One Starts Hospice
Hospice social workers are a significant part of the hospice team. Their role and the ways they can help can sometimes be confusing. Each hospice company may also have a different approach as to how they use social workers. Our questions will help you identify ways social workers can help you through the hospice experience and beyond.
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5. What is your role with the team?
Rather than ask the nurse or someone else on the team, meet with the social worker directly. Ask them about how they can help and the limits to their involvement. Inquire about the best way and time of day to reach them. If the social worker is not able to address your concerns, can they refer you to someone who can?
6. Can you provide counseling to my loved one?
The emotions that accompany the experience of dying are intense and complicated for the patient and their family. Having someone to talk to about these feelings can be a significant relief and can help everyone gather the strength they need to support one another.
Formal counseling may be needed later after your loved one has died, but while in hospice, social workers can sometimes offer informal therapy sessions.
7. Can you help with family conflict?
Death and dying are not only about grief, letting go, and acceptance. There can also be a great deal of conflict among family members about hospice. It is not unusual for some family members to object to hospice and advocate for curative treatments.
Once hospice starts, anger and resentment can sour what should be a time of connection and love. Ask the social worker if they can help with conflict by talking individually with frustrated family members or getting the entire family together to talk things out and reach a resolution.
8. We are unclear about what happens after death. Can you explain the process?
The entire hospice team can explain the process after death, but the social worker should be available to talk this through whenever necessary. The social worker can explain how and who determines death, the necessary paperwork, and what you should prepare for in terms of accounts and other financial obligations.
9. Are you available after our loved one dies? If yes, for how long?
After someone dies, there is a swirl of confusion mixed with grief. Countless details and notification of other family members and friends come crashing in. Is the social worker available to help with some of these details? How long can you depend upon the social worker after death?
Questions to Ask Hospice Nurses or Doctors After Hospice Care Has Started
Once hospice is started, questions about the nature and process of care are normal. Getting your questions answered will give you the time and energy to attend to your loved one’s emotional needs. As time goes on, don’t hesitate to get any of your concerns addressed.
10. How often will the nurse come?
Managing pain and other symptoms is a big part of what hospice does. A hospice nurse is responsible for assessing pain and making recommendations for medication changes based on what they observe.
Ask the nurse how often you can expect them to come each week, and also how to contact them outside those regular hours. A nurse should be available on call 24-hours a day.
11. How often will aides come?
Aides assist with bathing, dressing, re-positioning, hygiene, and toileting your loved one. When an aide is not there, a family member or another professional caregiver will need to assume these duties.
Knowing the exact schedule will help you put together a caregiving schedule. In most cases an aide will come only three days a week for an hour or so, leaving many of these responsibilities to family members.
12. How is pain managed?
Pain management is a complex medical task, and some families do not want their loved one to be incoherent in the process. Depending on your family member’s illness and at what stage they are in the dying process, asking about available pain management options is reasonable.
There may be some choices that are not as sedating so that you can converse with your loved one while still managing their pain.
13. What does the hospice doctor do?
When you begin hospice, you are turning over care to their team of providers. This means giving up your loved one’s primary care physician. Under Medicare requirements, a physician is responsible for writing orders and making changes to medications.
Ask about how often the hospice doctor will see your loved one and the extent of their involvement. Can you reach out to the doctor with questions and concerns?
14. What happens if my loved one improves?
Patients on hospice sometimes improve to the point where they no longer qualify for hospice. Particular Medicare guidelines will determine whether someone is discharged from hospice due to improving symptoms.
If that happens, you may need to put other support services in place. You will want to have adequate notice if your family member is being discharged from hospice. Knowing what the criteria are will help you prepare.
15. What if I decide to stop hospice?
Hospice rules are very clear. Once the family or the patient decides to start curative treatments again, they no longer qualify for hospice. You will want to know specifics about prognosis, and the course of the disease if you make this decision.
Asking the Right Questions About Hospice Care
Hospice teams deal with dying people every day. For you and your loved one, this may be a new and frightening experience. To the extent that they can express themselves, your loved one should be in control of their dying process. Everyone will have questions and those questions need to be asked and addressed. Our guide will make the journey easier.