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Navigating the health care and hospice system: Getting the right care at the right time- Part Two

By Terre Mirsch

For most of my life, I have been on the professional side of caregiving- supporting the patients and family members under my care in a variety of settings. In more recent years, I found myself on the other side of caregiving—no longer the expert nurse but a family caregiver. While having a professional background provided me with a baseline knowledge that isn’t always as readily available to others, the task of navigating the health care system was far more arduous than I had ever imagined. These experiences provided me with a renewed appreciation for the advocacy role that caregivers play every day.

I was fortunate that, ultimately, my loved ones received the care they needed at just the right time. I witnessed, firsthand, the benefits of home care services following my mother’s recovery from knee replacement surgery. Because of the prompt responses of her home care nurse and the extra motivation provided by the physical therapist, Mom has full mobility and enjoys an active retirement. When another family member experienced frailty associated with chronic illness and aging, the home care team of nurses, aides, occupational and physical therapists adjusted medications while modifying the home environment to ensure safety and the ability to receive care at home.

But I knew that the type of care other family members received at home would not be enough following my father’s diagnosis of advanced esophageal cancer. The few chemotherapy treatments he received failed to slow the progression of his cancer and his decline was evident. While I had mentioned hospice to both Dad and his physician in our initial meetings, the subject had not come up again. I vividly recall the day we called an ambulance to transport Dad to the hospital following another fall. “We need hospice care more than we need chemotherapy right now,” I said to his physician. And after a few more obligatory tests and procedures, we got connected to a wonderful hospice team who cared for him for the next thirty days.

For those facing life limiting illness, the Medicare Hospice Benefit provides a comprehensive range of services that supports patients and their caregivers when treatment goals focus on comfort and quality of life. Medicaid and most private insurances offer the same range of care and support.

Let’s talk about some of the important aspects of hospice coverage.

The Medicare Hospice Benefit

Hospice care focuses on comfort, quality of life, and holistic support for those with life limiting illness and their families. It is distinguished from other types of care by a focus on palliation and comfort as treatment goals, care and support of both patient and family, a team approach to care, and bereavement support for family following loss of a loved one.

In order for your loved one to receive the benefits of hospice care, the following eligibility criteria must be met:

  • Your loved one must be covered by Medicare Part A. All Medicare-covered hospice services are covered under the Medicare Hospice Benefit, even if your loved one is covered under a Medicare Advantage plan or other Medicare health plan. Those who are not Medicare beneficiaries may have hospice coverage under Medicaid or private insurance.
  • The physician and hospice medical director must certify that your loved one has a terminal illness with a limited life expectancy, specifically a life expectancy of 6 months or less if the illness runs its normal course. (I’ll talk more about this in a moment…)
  • Your loved one, or designated representative, must elect to receive hospice care instead of other Medicare-covered services for care related to the terminal illness. Medicare continues to pay for covered services for care not related to the terminal illness.
  • Care is provided by a Medicare-certified hospice agency.

For many, mention of the word ‘terminal’ brings a vision of the last hours or days of life when, in fact, hospice care is available for a much longer period of time. Of course, no one has a crystal ball and life expectancy for many illnesses can be unpredictable, at best.

Rather than focusing on specific numbers or time frames, I urge people to think of life expectancy in this way:

√ Is prognosis most likely measured in months rather than years?

√ Have medical problems or hospitalizations occurred more frequently during the last 6-12 months?

√ Do you find that each time your loved one comes home from the hospital they are not quite as well as the time before?

√ Is your loved one experiencing other complications such as progressive weight loss, falls, skin breakdown, infections, increased pain or other symptoms?

If the answer to any of the above questions is yes, your loved one may be eligible to receive hospice care.

For many years, hospice care was largely provided to those with advanced cancer. Today, more than 60% of hospice recipients have an illness other than cancer including: Alzheimer’s dementia; heart failure; respiratory illness such as COPD; kidney or liver failure, neurologic illness such as ALS, Parkinson’s disease, or stroke; or failure to thrive. Most hospice programs are available to talk with you and your loved one about hospice care and evaluate whether your loved one is eligible to receive hospice care at this time.

It is all about getting the right care at the right time… by understanding our options and the benefits that are available to us. Unfortunately, too few people understand the physical, emotional, and spiritual benefits of hospice care. Fewer understand the financial benefits derived when medications, supplies, and equipment are covered services. Next week we’ll talk more about covered hospice services including where hospice can be provided.

2 Comments Post a comment
  1. Terre, another wonderful article. I love that you always include your experiences from both sides of the bed – so to speak.

    My mom was with the VNA palliative team until the last few weeks of her life when we switched over to hospice who were able to provide some additional support. Although the hospice team mom and I worked with did not provide much day to day care, (her nurse came once or twice a week), there was always someone available day and night by phone. this was immensely helpful managing breakthrough pain and agitation during the night hours. They also provided oxygen and many medications to manage a number of situations, and went over how to use them all. Over the last three days of mom’s life we did have a wonderful woman who played the flute, a reiki practitioner, a home health aid and for the last two days, two overnight nurses. The day after she passed away four women came to sing to my friends and I. Overall I felt supported and cared for and the social worker was terrific. the other wonderful thing was that they had their own pharmacy which delivered meds which in the last couple of weeks of her life were changing daily and all I had to do was open the door and sign for them. They were wonderful to work with.


    August 17, 2012
    • Terre Mirsch #

      Thank you Beth- for your kind words and for sharing your experiences with hospice care. Caregiving is a 24/7 challenge. We, too often, don’t plan for the care we or our loved ones are going to need as we age or experience illness. Knowing what resources are available to provide support becomes important.

      You mention come important benefits of hospice over other types of care: 24 hour triage and on-call availability; the management and delivery of medications, supplies, and medical equipment; and the team approach to supporting not just the patient, but the family as well. Some hospices also provide an array of complementary therapies that may include music and energy therapies are you experienced. It is important for our communities to understand these benefits and hearing about them directly from those who have experienced them is important. Thank you, again, for sharing your story and for following Caring with Confidence.

      August 19, 2012

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