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Hospice Care: Living with Terminal Illness

By Audrey Wuerl
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Patients and their families are usually overwhelmed when faced with the diagnosis of terminal illness. Many patients are symptom-free until an illness or hospitalization reveals they have a life-limiting condition. Suddenly, everything changes. Feelings of fear, confusion, doubt, and even isolation are common. Major health decisions must be made. Most people are at a loss as to where to turn for guidance. A hospice care team can help you navigate this new terrain.

It is never too early to call hospice to inquire about comfort care. Comfort care involves managing pain and symptoms so patients can live their lives as fully as possible. Generally it follows therapies such as chemotherapy or radiation. The concentration is on quality of life when quantity of life is limited. The patient’s primary care physician (or discharge planner, if the patient is still hospitalized) is a good person with whom to start the conversation. You may not feel hospice care is right for you or your loved one now, but the best time to ask about hospice care is before you need it.

What Can I Expect?

The hospice philosophy is a holistic one that embraces the physical, emotional, social and spiritual aspects of every patient. But remember: this journey is not about the patient alone. It involves the patient’s entire supportive network. Hospice care is interdisciplinary—including physicians, nurses, social services (social workers, clergy, volunteers and bereavement staff)—and everyone involved is prepared to support you on the road ahead.

Hospice care is synonymous with supportive care. Whether you are the patient or the caregiver, we stand ready to provide practical guidance, training, and nursing supervision so the patient can remain at home as long as possible. We provide state-of-the-art pain management and symptom control. Other resources and services include home health aides, who can assist with care when appropriate; volunteers who can provide respite or companionship; medication relative to the terminal diagnosis; and equipment such as hospital beds. When remaining at home is not an option, hospice services are provided elsewhere: at nursing homes, residential care facilities, or a hospice facility, if your community has one.

Steps to Take

Living with a terminal illness impacts every area of a patient’s life as well as a caregiver’s. There are new decisions and challenges daily. Everything from your finances to your career, social life and plans for the future will be impacted. The hospice team can help you identify coping strategies. You and your loved one are the important players here; it will be necessary to address end-of-life choices (what you want or don’t want) to ensure these decisions are not made during a crisis. Let hospice help you with direction and guidance regarding some of these decisions. The National Hospice and Palliative Care Organization (NHPCO) suggests the following steps:

  • Make an appointment with an attorney to prepare/update a durable power of attorney for financial decisions
  • Update your life insurance policies as needed
  • Provide your family and physician with copies of your advance directive (a document that states what you do and do not want in the event of a health catastrophe)
  • Review your health insurance so you know what is covered and what isn’t
  • Write down important information such as names of banks, where safe deposit keys are, names of attorneys, etc., and share it with someone you trust
  • Talk with your employer about disability and other benefits

Take one day at a time. There are many adjustments to be made. While living with terminal illness can be very difficult, the diagnosis can also be a blessing. Knowing that your time is limited puts things into perspective. It can also be a special time to examine relationships and repair them as needed. By electing to begin hospice care, you will acquire an entire team of professionals to help with care and decision-making. You don’t need to feel alone. We will help you celebrate the remainder of life, and find some peace, understanding and balance.

Celebrating Life!

Audrey Wuerl