Planning for Hospice and Palliative Care: Don't Wait

It is never too early to think about end-of-life care.

This includes 24-hour elderly home care or hospice and palliative care.

“Learning about hospice care should happen long before there's a medical crisis,” said Jon Radulovic, Vice-President of Communications at the National Hospice and Palliative Care Organization (www.nhpco.org). “There's a misconception that hospice is only 'brink-of-death' care and that's not the case at all. Hospice works to help people live as fully as possible.”

The philosophy behind hospice care is for a pain-free and dignified death surrounded by a compassionate care team when someone is facing a life-limiting illness or injury. Hospice care might take place in someone’s home or at a hospice facility. It is covered by Medicare, Medicaid, most private insurance plans, HMOs and other managed care organizations. Palliative care is similar in philosophy to hospice care, but is for people who might still be in treatment for their illness.

Whether it is hospice or palliative care, there are many issues to consider ahead of time.

“Under hospice care, an extensive plan of care unique to every patient would be developed by the entire hospice team and would reflect a broad assessment of medical and psycho-social needs - the plan of care reflects the needs of the patient and of the family caregivers as well,” Radulovic said. “Palliative care provided prior to hospice admission is often directed by a palliative care physician, yet other members of the care team would contribute to the care plan.”

When making such plans, it is not just between a patient and their doctor or a single caregiver, but rather a team that involves families and specialists as well as the patient.

“One of the most frequent things hospice professionals hear from the patients and families they serve is, ‘Why didn't we begin hospice care earlier?’” Radulovic said. “People often wait too long before starting hospice and when they begin care, they discover the vast array of services offered.”

Waiting too long to make plans – which is really communicating about one’s wishes – can make an already difficult time more stressful.

“Another very important factor would be caring conversations with all family members and other loved ones and care professionals about what the priorities would be to a person who might be facing a serious or life-limiting illness,” Radulovic explained. “Often families assume that they all would know the wishes of a patient, but that's not always the case. When a family is facing a medical crisis, that can be a difficult time to have those important discussions.”

Logically, it makes sense to discuss palliative care and hospice care when one is diagnosed with a serious illness. Yet, just like advanced directives, funeral arrangements, and other issues surrounding mortality, it is wise for people to share their desires with loved ones at any time.

“In reality, talking about what's important and how hospice and palliative care might be something a person would want should be a discussion that can – and should – be held right now, and revisited frequently,” Radulovic said.

To get started on palliative and hospice care planning, we encourage you to read through Homewatch CareGivers’ Let’s Talk guide. This guide has tips to help you talk to your loved ones about what they want as they age.

You can also visit www.caringinfo.org. Here they have free brochures that include state-specific advanced directives, checklist of questions to ask for both palliative and hospice care, tips on how to talk with family – even when there are disagreements – as well as health care providers about your wishes.

Obviously a major topic for discussion when planning for palliative care or hospice care is finances. Homewatch CareGivers also has the Guide to Legal and Financial Planning Needs of Seniors you can read through. Additionally, people are encouraged to make a financial inventory list, allow others to handle their finances, research possible sources of financial assistance, and verify the medical coverage for hospice or palliative care. Once all of the plans are made, it is imperative they be shared with everyone from family members to health care providers and legal and financial advisors.

Certainly the focus is on individuals who are still well enough to make their own plans for hospice or palliative care. However, the National Hospice and Palliative Care Organization also provides advice to caregivers – from how they can help with planning to how to care for themselves.

“Also, all hospices have information about services they offer that they are happy to share at any time,” Radulovic said. “Learning what resources are available in a community can happen at anytime."

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