Frequently Asked Questions
and Answers

There are four levels of hospice care. The levels are available based on need.

1. Routine hospice care is the level of care most often provided. It’s administered on a daily basis, either in a home setting or in a facility.
   
2. General inpatient hospice care is only available to those with symptoms that are unable to be managed under routine hospice care. For instance, if the terminally ill person’s pain or agitation cannot be managed in the home setting, the hospice provider may offer to transfer the person to a general inpatient setting. There are stringent Medicare and Medicaid regulations that must be followed for a person to qualify for this level of care. Care may be provided in a dedicated hospice facility (hospice house), a nursing facility or a hospital.
   
3. Continuous hospice care is provided in the home setting with hospice staff present for an extended amount of time throughout the day. Continuous hospice care is only offered in cases where efforts to control the person’s symptoms are unable to be controlled with routine hospice care. As with general inpatient hospice care, there are stringent Medicare and Medicaid regulations that must be followed to qualify for this level of care.
   
4. Respite care is short term care (up to five days) to temporarily relieve a caregiver of their caregiving duties. It’s generally provided in a nursing facility that works with the hospice provider. In some instances, respite care may be provided in a dedicated hospice inpatient facility.

Yes, hospice services can be canceled at any time. If you or your loved one are having thoughts of canceling hospice services, reach out to your hospice provider to have a discussion. This may be a good time to sit down with the hospice nurse or social worker to reevaluate your goals of care and determine if hospice is still able to meet those goals.

The goal of hospice care is to keep the terminally ill person comfortable and in the home setting, but there may be times when emergency care is acceptable for a reason unrelated to the terminal illness. These situations should be discussed with the hospice provider prior to going to an emergency room.

It’s also important to always call the hospice provider before calling 911.

A hospital bed is not required, but it’s something offered at no additional cost to the person receiving hospice care.

A hospital bed is often a more comfortable option than a traditional bed since a great deal of time is spent in bed. It’s also beneficial because it can be easily raised and lowered at the head and feet, making activities, such as eating and drinking much safer.

Additionally, it’s helpful to the caregiver, as it makes administering care more comfortable by reducing the need for deep bending.

No, a DNR is not required. However, the hospice provider is required to discuss a person’s DNR status at the time of admission.

If the person does not already have a DNR order in place, this is a good time for the person entering hospice care and the family to consider this action. Cardiopulmonary resuscitation can be of significant discomfort to a terminally ill person in declining health, and in many instances it does not offer any medical benefit.

A person receiving hospice care can live alone if they are able to provide for their basic needs and are safe doing so. However, it’s important to have a plan in place for if it becomes no longer safe to live alone.

Unfortunately, most people receiving hospice care will decline during their time in hospice and will need to be cared for by another individual. When this happens, the caregiver or a family member may move into the home, or the person will move into a caregiver’s residence or into a facility.

A person receiving hospice care can continue to see any of their physicians, but it’s important to let the hospice provider know prior to scheduling any visits so the hospice provider can ensure that care related to the hospice diagnosis is not duplicated.

While it’s OK to attend these visits, it’s also OK that visits cease. Traveling can be difficult, and that’s one reason why hospice care is provided in the home environment—to ensure that the person remains comfortable while having their medical needs met.

Yes, the hospice care team strives to honor an individual’s spiritual and cultural beliefs. It’s important that beliefs be discuss with the hospice nurse in advance, such as at the time of admission.

In addition, discussions may be had with the hospice chaplain and social worker to ensure beliefs are honored.

No, sitting services are not covered under the Medicare or Medicaid hospice benefit. These services must be paid for privately, but reach out to your hospice social worker, who may be able to offer a list of service providers.

Morphine can be scary, but when used appropriately, it can provide comfort, not only for pain but also to ease breathing difficulties.

Some caregivers and family members are hesitant to administer morphine to their loved one out of fear that it hastens death, but, this is not the case when a small dose is given initially, with additional doses titrated according to need.

Addiction is also a fear, but since the medication is given in titrated doses for a brief period of time, this should not be of concern.

Morphine is given a “bad rap,” but when used safely it can be useful in helping those receiving hospice care achieve comfort.

Unfortunately, most people receiving hospice care reach a point where they are no longer able to swallow, thus unable to eat and drink. This can be hard for the caregiver and family to accept, yet research suggests that in most cases this is not uncomfortable for the person.

Nourishment simply becomes no longer needed. A body that is not shutting down needs food and liquid for energy, but one that is going through the dying process has no need for sustenance.

Most people receiving hospice care will enter a stage of continuous sleep as the end of life draws near. The amount of time spent sleeping during the day increases over time, until the person is sleeping more than they are awake. And at some point, this will likely become a state from which they can’t be roused.

While this state is expected and not a reason to panic, feel free to discuss it with the hospice provider.

Hospice providers are asked this question repeatedly. The best answer is sooner rather than later.

It’s nice when family and friends are able to visit while their loved one is still alert. Encouraging out-of-town family to visit during this time may be wise. Many family members want to be at their loved one’s bedside at the time of death.

When significant signs of decline begin to show, it’s best at that point to notify anyone who desires to be at the bedside.

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Some people nearing the end of life may have a surge of energy where they become more alert. This often catches caregivers and family off guard. This surge of energy or alertness is not an indication that the person is getting better. It is just another part of the dying process.

There really is not one right way to say goodbye. Some caregivers and family members use the time in hospice to express their thoughts and feelings directly to their loved one.

Although the person receiving hospice care may not, in some cases, be able to respond, it’s best to assume that they can hear and sense what is going on around them.

It’s important to keep the care environment as calm and peaceful as possible. It’s OK to hold a hand, but it’s a good idea to limit excessive physical contact. At this stage, some become very sensitive to touch.

While a physician or hospice nurse may be able to give a general idea of how much time a person at the end of life has remaining, it’s impossible to know for sure. Therefore, if there are things the family or person needs to take care, it’s best to do so sooner rather than later.

This is a personal choice, but know that it can be very difficult, and many hospice staff and funeral home staff recommend against it.

It’s often best for family members to say goodbye to their loved one and then step away out of sight. 

After being contacted by the hospice nurse, a representative from the funeral home will take your loved one into their care.

The representative will generally introduce themselves to the family and give an idea of the next steps to expect.

The representative will then respectfully transport your loved one to the funeral home.

Following transport, generally, the funeral home will call the caregiver to set up a time for the family to make final arrangements.

Family members may sit for days and hours at their loved ones bedside to be there at the time of passing, but then when they leave the room for a short time, their loved one passes. This is a common experience. Some say that this is the choice of the dying and nothing to feel bad about.

We must acknowledge the many moments we are there for our loved one and not feel bad about the moments we are not.

Grief is a personal experience, and it’s OK to not feel sad.  It’s not out of the ordinary for caregivers or family members to express a sense of relief once their loved one has passed.

Bereavement services typically last 13 months. This is to get the family through the first anniversary of their loved ones death. If additional support is needed, call the hospice provider, and ask to speak with the chaplain or bereavement coordinator.

There is no right answer to this question. Grief is personal, and moments of sadness may come and go, often occurring when least expected.

Give yourself permission to grieve in your own way. No two people grieve the same way. It’s important, though, that if you believe you are grieving in ways that are not healthy to seek help. The hospice social worker should be able to help you find support if needed.