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Palliative care and hospice can enhance quality of life at different stages

Columnist Carol Bradley Bursack says finding a primary care physician with a background in caring for older adults can be a big help.

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Carol Bradley Bursack, "Minding Our Elders" columnist.
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Dear Carol: My mom has advanced lung disease and is also in the middle stages of dementia. While we understand that neither of her diseases can be cured, we’re told they can be managed. I think that management should be about making her quality of life the best it can be, but Mom’s miserable. When I asked her doctor about options, he said they are doing all they can for now. I suggested hospice care, but he says that he doubts that she’s “ready.” I feel so helpless. What else is there? — VL.

Dear VL: A holding pattern like your mom's is confusing and emotional even with proper support. Yet, I’m sorry to say that many doctors aren’t prepared to help you beyond their specialty.

For that reason, I’d suggest that if her primary care physician isn’t someone who has a background in caring for older adults, you find a doctor who is. A geriatrician is ideal. However, since there aren’t enough geriatricians to go around, someone in internal medicine who works with a significant percentage of older patients can be a good alternative.

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If you’re a longtime reader, you’ll know that I’m a fan of hospice. Both my parents received care from Hospice of the Red River Valley, and HRRV’s help was invaluable for pain management and support. You could clarify the requirements for hospice care by directly contacting your local agency. If your mom is not yet meeting the necessary criteria, consider palliative care.

Palliative care is a service that provides comfort care while patients are still at a stage where they may benefit from treating their current diseases. This type of care is delivered by a specially trained team of health specialists who provide quality of life for the patient as well as the patient’s family.

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Palliative care can be offered alongside curative treatments in a clinic, hospital or home setting. Smaller community hospitals may not offer the in-depth services of larger hospitals, but most will work hard to offer the best support that they can deliver.

Ideally, your mom’s palliative care team would include both a doctor and a nurse trained in palliative care. Additionally, a specially trained social worker would likely be involved, as well as a non-denominational chaplain or someone who can offer spiritual support. In most cases, Medicare or other health insurance should cover much if not all of the additional cost.

Even as you investigate palliative care, I’d encourage you to stay informed about hospice qualifications because the rules can change. The usual criteria would include that the person is unlikely to live past a six-month window. However, many people live longer than that once they receive the support that they need from hospice. In that case, some will go off the care, but many others will be reinstated for a time.

Best wishes, VL. You’ll feel like you’re jumping through hoops to get your mom the care she needs. This takes determination and at times, courage, but you obviously have both in spades.

Related Topics: WELLNESSFARGOFAMILY
Carol Bradley Bursack is a veteran family caregiver and a nationally-recognized presence in caregiver support. She's the author of “Minding Our Elders: Caregivers Share Their Personal Stories,” a longtime newspaper columnist and host of her blog at mindingoureldersblogs.com. Carol's an introverted book nerd, so you won't see her mugging in viral videos, but you can easily reach her using the contact form at mindingourelders.com.
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