Demystifying Hospice

What Is Hospice Care?

If you are caring for someone with dementia, the word hospice may feel frightening or final. You may worry that considering hospice means you are giving up, that care will stop, or that you will lose control over decisions. That hesitation is understandable. Choosing hospice, however, does not mean choosing less care. It means changing the goal of care.

Hospice focuses on comfort, dignity, and quality of life for someone with a limited life expectancy. Hospice does not hasten death, and it is not a place you have to move your loved one into. Care is usually provided wherever the person lives, whether that is at home, in assisted living, or in a nursing home.

Admission into hospice generally requires a prognosis of six months or less if the illness follows its expected course, though there is no time limit to receiving hospice care. Eligibility for hospice is re-assessed every sixty days, and if the person continues to meet the requirements, they can remain in hospice indefinitely.

What Would Choosing Hospice Look Like?

If you choose hospice, a team works with you to create a plan based on your loved one’s needs and preferences. A nurse may visit to assess symptoms, recommend ways to manage discomfort, and teach you what changes to expect. A hospice aide may help with bathing and personal care, while a social worker can offer emotional support and connect you with resources. Spiritual care and volunteer companionship may also be available if your family wants them.

You remain an important part of the care team. You can ask questions, participate in decisions, and contact hospice when symptoms change or you are unsure what to do. Your loved one does not have to sign a Do Not Resuscitate order to enroll. You may also stop hospice if the goals of care change, and your loved one may return later if eligible. Hospice can support you through caregiving and continue offering bereavement support after your loved one dies.

Choosing a Hospice Provider

Hospice agencies follow the same basic regulations, but the support you receive can vary. Try speaking with more than one provider before deciding. Ask how often a nurse will visit, who is available after hours, and how quickly someone will respond when you call. Find out which medications and equipment are covered and what respite care is available.

Pay attention not only to the answers, but also to how the staff communicates with you. Do they listen carefully? Do they explain things clearly? Do they treat you as a partner and show respect for your loved one’s values, culture, and wishes?

Remember: learning about hospice does not commit you to enrolling. It gives you information and more time to make a thoughtful decision about what hospice care could look like for your family.

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If you are contemplating hospice care, or simply want to be informed for the future, the Normandale Center's social workers are available for one-on-one care consultations. You can ask all of your questions, receive referrals to hospice providers, and get ongoing support. If you are interested in scheduling a consultation, please contact us via e-mail at info@normandalecenter.org, via phone at 952-929-1698, or use the contact form on this website.