We’re here to help you make important care decisions

When serious illness strikes, most patients and their families initially hope to stop or alter its course by exploring aggressive or invasive treatments. At the end of life, most people hope for quality of life, comfort, peace, and to be near loved ones and familiar possessions. Hospice helps to achieve those goals.

With hospice, your mother’s quality of life will be the top priority. A physician and a registered nurse will oversee management of pain and other symptoms, while a team of professionals provides support with daily functions and non-medical care, as well as psychosocial and spiritual needs.

Hospice does not speed up or delay the dying process. The focus of hospice care is solely to relieve symptoms such as pain, anxiety, and breathlessness at the end of life, allowing natural death to occur in peace and with dignity. The medications used at end of life are for symptom relief only and are never used to hasten death.

Yes, he can. Hospice encourages the patient’s family doctor or specialist to remain engaged in their care. The hospice physician will communicate with your father-in-law’s family doctor, who may know the patient better (medically) than anyone else, to determine the specific medical needs addressed in his individual plan of care.

Feel free to ask the doctor for an eligibility assessment to see if your grandmother is eligible for hospice care. Hospices consistently hear that patients/families wish they had received hospice care sooner, so it is a good idea to let the physician know that you are open to discussing this option at the appropriate time.

If you prefer, contact a local hospice directly to learn more about their services. Patients and families may reach out directly; a physician’s referral is not required for the initial call.

Yes. Hospice care is available to people of any age, so long as they meet eligibility requirements.

Guidelines regarding hospice care for patients under 18 are different than those for adults; they allow for “concurrent care” that includes efforts focused on both cure and comfort.

Yes. In fact, people with dementia comprise the fastest growing patient population for hospices.

When hospice began in the United States in the mid-1970s, most people receiving hospice care had cancer. While hospices still care for cancer patients, the majority of people entering hospice today have other life-limiting illnesses such as end-stage heart disease, neurodegenerative conditions such as Parkinson’s disease, lung or kidney disease, or Alzheimer’s and other dementias.

You do not need to be actively dying to receive hospice care. Because your oncologist has given you a prognosis of less than six months, with no further treatment options available, you are more than likely eligible to receive hospice services now.

Early hospice care can give patients time with family, friends, and pets, as well as symptom management and other support. Although hospice care neither hastens death nor prolongs life, studies show that patients with certain illnesses live somewhat longer with hospice care than those with the same illness who do not choose hospice care.

Yes, you are free to leave a hospice program at any time, for any reason, without penalty. And you are permitted to re-enter hospice care as long as you meet medical eligibility criteria at the time of your re-enrollment.

You are free to change hospice providers if you are unhappy with the care provided. Under the Medicare benefit, this is allowed once during the patient’s initial 60-day certification period, or once during the 60-day benefit periods that follow.

Yes, your brother can go home and receive hospice care there. A DNR is not required.

The purpose of hospice care is to allow for a peaceful death in a comfortable and familiar setting. Many people who choose hospice care wish to have a DNR order in place to avoid unnecessary medical intervention, but having a DNR is not a condition for receiving hospice care.

While all patients receiving hospice care are required to have a prognosis of six months or less if their disease continues to progress as expected. However, predicting the actual date or time of death is challenging. If your father continues to meet the eligibility requirements for his terminal condition and shows continuing evidence of decline, he can remain in hospice care beyond 6 months.

If at some point he does not meet eligibility standards, federal rules require the hospice to discharge him from their care. Upon discharge, his Medicare benefits would revert to the coverage he had before entering hospice care.

Although state and local regulations can be barriers in some places, people with IDD usually can receive the same hospice care provided to any patient/family. This applies even if they live in a group home or other residential setting, where services may include support for direct-care staff.

It is important to recognize that many people with IDD have the capacity to participate in decisions about their end-of-life care, whether through an advance directive or in conversation. They should be informed about their illness, the options available, and the type of care those choices involve.

Yes, you can go to the hospital. Your hospice team will provide all aspects of care for the illness that qualifies you for hospice services, but like all hospice patients, you are free to seek treatment for conditions or illness unrelated to your hospice care, but you must revoke your hospice benefit for the period of your hospitalization.

The majority of hospice patients receive care in their place of residence, which may be a private home, assisted living community, or long-term care facility. In some instances, hospice care is provided in an inpatient hospice setting — typically for people whose pain or other symptoms cannot be adequately managed in their home.

Hospice is a philosophy and type of care, not a place to go. While your uncle is receiving excellent care in his nursing home, hospice can provide reassurance that he is receiving optimal care and symptom management during the time that remains.

For example, hospice can provide medications related to her terminal illness, expert management of pain and problems with breathing or swallowing that can occur at the end of life, and comfort care, if needed. The
hospice team also can educate nursing home staff

Keep in mind that the hospice benefit does not cover the cost of housing a patient in a nursing home or assisted living facility (also known as daily room and board fees) except under highly limited circumstances. However, nursing home and assisted living costs may be covered by Medicaid or other sources such as VA housing benefits or supplemental long-term care insurance.

A patient may refuse food and fluids due to physical discomfort or pain, the side-effects of medication, depression, or simply a decreased sense of taste or smell. It also can mean that your grandmother is coming to the end of her life [Link to Symptoms at end of life] and, despite your best efforts, her ability to tolerate food and fluids is declining as her bodily functions begin to slow down.

A clinical assessment is the best way to determine the root cause of your grandmother’s behavior. Her primary care provider may refer her to hospice if her refusal of food is a symptom of end-stage dementia.

In the meantime, offer very small portions of her favorite foods and drinks more frequently throughout the day. This may be more enticing than larger meals at prescheduled intervals.

Many patients come into hospice with a feeding tube in place. Assuming he meets the eligibility criteria, a feeding tube alone would not disqualify him from receiving hospice care.

Total Parenteral Nutrition (TPN) can be a life-saving therapy when used temporarily under close medical supervision in an acute-care setting where frequent blood samples can be taken and the TPN formula adjusted as needed.

For hospice patients in residential settings where medical supervision, blood draws, and lab work are not available around the clock, TPN can increase the risk of adverse side effects and contribute to life-threatening complications.

Ethical guidelines, based on evidence-based studies, recommend not providing TPN if the risks and side effects outweigh the benefits. At the end of life, intravenous fluids in any form can increase the risk of fluid overload, resulting in increased swelling (edema) in the extremities, along with heart and lung congestion.

Learn more about medical and ethical challenges at the end of life. (LINK to ANH including video with panel discussion).

Your hospice provider will ensure that durable medical equipment and assistive devices are in place before your father transfers to your home. Once he arrives, the hospice nurse, home care nurse, or an occupational or physical therapist can help you ensure that appropriate modifications are in place.

For example, if your father is at high risk of falling, hospice can deliver a hospital bed that can be lowered closer to the floor at night or when he is in bed and unsupervised. The provider also may bring in “fall floor mats” that can be placed bedside.

For more ways to make your home safer, read a list of safety tips for hospice patients at home. (LINK to Caregiving page)

As your friend’s care needs increase, it may be time for his family to consider another living arrangement , including moving him to a location where around-the-clock supervision is available. The assisted living (AL) staff will probably recommend when this is appropriate.

Talk to his sister and suggest that she quickly arrange a meeting with the AL facility’s case manager, the primary hospice nurse and/or social worker, concerned family members, and your friend. Together, they should evaluate options and develop a care plan that addresses his evolving needs.

Until a longer-term plan can be implemented, review a list of tips for keeping dementia patients safer at home or in assisted living facilities. (LINK to Caregiving page)