6 Tips to Build a Care Team for Someone Who Is Terminally Ill

Author: Shannon Miller Lifestyle

By Melanie Haiken, Senior Editor, Caring.com

It’s not easy to take care of someone who’s very sick.

And it’s terribly hard to cope with the news that a loved one’s illness is incurable and, eventually, terminal. Doing both at once is one of the biggest challenges you’ll ever face, and one you can’t face alone. Here’s how to reach out and create the care team you need to make your loved one’s final illness as comfortable as possible.

1. Get on a first-name basis with the doctor, nurses, and staff.

It’s much harder to get the care your loved one needs when you’re an anonymous voice on the telephone, or are receiving only secondhand information from your loved one about the doctor’s recommendations. Ask to attend a medical appointment and meet the doctor. Introduce yourself to nurses, receptionists, and technical staff, and ask about the best system for getting your questions answered. (There may be a direct line to the advice nurse, or asking for a certain nurse by name may get you past the call center.) When picking up prescriptions, always accept the consultation with the pharmacist and ask as many questions as you need to. Everything will become simpler and less stressful once you have established relationships to draw on.

2. Get a signed HIPAA clearance.

HIPAA  is the acronym for a law (Health Insurance Portability and Accountability Act) that protects patient privacy and the privacy of medical records. The problem is, privacy is not necessarily a good thing when you’re caring for someone who’s seriously ill; you need to be in the loop to know what’s going on. But doctors and staff can’t share information about your loved one without this clearance. Ask the doctor for a HIPAA release form, get it signed by your loved one, and discuss with the doctor the best and simplest ways to access the information that HIPAA entitles you to.

3. Set up an information and support network for family and friends.

The last thing you need, when you’re overwhelmed by caring for your loved one, is well-meaning phone calls, e-mails, and texts offering help or asking, “What can I do?” Instead, delegate a close family member to take charge of informing and coordinating help from others. Use a group e-mail list or set up a Web or Facebook page where you or your designated helpers can post updates about your loved one’s condition and request help. Don’t be afraid to be specific. Examples:

  • We need low-salt dishes frozen in single-serving portions.
  • We need a volunteer to pick up prescriptions tomorrow from the hospital pharmacy.
  • The garden is in desperate need of watering.

4. Involve hospice.

This step is probably the most important, and the most-often delayed. Calling in hospice care does not mean that you acknowledge your loved one is dying. Hospice care is authorized for a patient who’s likely to have six months or less to live. Note that key word: likely. Hospice care can be renewed as long as necessary if your loved one makes a remarkable recovery and gains time.

How is hospice different from other medical care? Hospice care is available in your home, and it involves a coordinated team of professionals who support your loved one, you, and the entire family. Because hospice nurses work exclusively with the terminally ill, their presence can be enormously reassuring and strengthening. Hospice visits also offer you a respite from care-giving.

In addition, hospice nurses may have access to medications such as opiate-based painkillers that are more restricted in the regular medical setting. Because hospice care is provided with the understanding that the patient is at the end of his life, addiction is less of a concern, making a much wider range of painkillers and painkiller delivery methods available.

5. Reach out to local and religious groups.

If you or your loved one belongs to a church, religious organization, or civic group, you have a built-in resource for support. Churches organize meal deliveries, comfort visits, and anything else you can think of to ask for. Civic organizations and clubs often do the same, and they may even take up collections or organize fund-raisers if you’re in need of financial help. Your local Area Agency on Aging can direct you to the full range of services available in your area, including social service agencies, transportation services, meal deliveries, patient advocacy, and more.

6. Get a list of services and referrals.

You’ll be amazed and relieved to discover the range of services available, both through your medical provider and outside of it, to help your loved one and you. Here are just a few of the professionals you may want to consult:

  • A social worker
  • A therapist
  • A geriatrician
  • A nutritionist or dietitian
  • A pain specialist
  • A physical therapist
  • An occupational therapist
  • An acupuncturist or integrated medicine specialist
  • A caregiver support group

Take advantage of any services authorized under your insurance; after all, each of these is taking something off your plate. Whether it’s a dietitian to create a meal plan, a therapist to help with depression, or a support group to give you somewhere to vent, why not let others ease your load?



About the Author

Melanie Haiken is a senior editor at Caring.com, the leading online destination for caregivers seeking information and support as they care for aging parents, spouses, and other loved ones. Melanie has written about health and family-related issues for numerous magazines and websites and has worked for San Francisco’s renowned Center for Investigative Reporting.

Other helpful resources include: How can I get a free HIPAA release form?, and Hospices.

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