It’s time to correct the preconceived notions about hospice care and palliative care, misconceptions that keep people from getting the care they need. Bottom Line Personal turned to patient advocate Annette Ticoras, MD, to explain what each approach provides and how they differ.
Hospice care and palliative care are not what they were 25 years ago, when you might have investigated them for your ailing parents or another loved one. Then they often were thought of as giving up hope, and that impression has lingered—many people still are reluctant to even hear about these services. Reality: When appropriate, palliative care or hospice care can be a very positive option, depending on where a person is in his/her health journey.
Palliative Care vs. Hospice
Palliative care is support that enables you to live better with a chronic condition that’s likely to be with you for the rest or most of your life. To manage your “new normal,” care may come from any number of specialists based on individual needs. Palliative care does not mean that you have given up hope. Indeed, you can still try new treatments as they become available.
Hospice care is support that helps when you’re facing end-of-life issues…when you no longer want to attempt curative treatment for a disease. At its core, hospice provides medications to ease pain, usually administered by a hospice nurse. Hospice can be delivered in many settings, from your own home to a hospice facility or a nursing home or continuing care residence.
Bottom line: Palliative care is about living and improving that process, while hospice care is about dying and improving that process.
Palliative Care: The Details
Living with a chronic disease, such as respiratory, heart or kidney disease, or being a cancer survivor, takes a huge toll. You may be challenged by disabilities and/or face emotional distress over the changes. Palliative care support services can help you cope with these day-to-day issues—arranging for transportation to medical appointments…connecting you with complementary treatments such as meditation, massage or acupuncture…or finding you a mental health therapist.
A member of your medical team might introduce you to palliative care after your treatments are finished…or you can bring it up yourself—simply ask your specialist or primary care doctor if these services would be helpful for you.
A palliative care specialist will do an evaluation to determine how you can best be helped…go over resources available to you…put through referrals…and act as your point of contact to make certain that all your needs are met. Over the ensuing weeks and months, your needs will be re-evaluated, so that palliative care can keep meeting you where you are.
In most cases, insurance covers palliative care, just as it pays for chemo or dialysis, for instance. What’s not covered: Durable medical equipment such as a walker or a hospital bed at home.
Hospice Care: The Details
Hospice services are available when you make the decision to stop all medical treatments that could prolong life and when it’s likely that you have six months or less to live. The focus is on comfort and compassion, including whatever is needed to minimize your pain. That could mean bringing a hospital bed into your home or figuring out the logistics to you get up the stairs to your bedroom so you can sleep with your spouse. These costs generally are covered, while medical treatments are not.
Your physician will write out an order for hospice care, stating that your condition is terminal. But if circumstances change, you can go off hospice care—there are many examples of people who entered hospice yet two, three or more years later are still going strong.
Hospice is an adjustment, especially if you were actively pursuing treatments. You will no longer see the specialists who helped you and you’re no longer in a traditional hospital setting. Your contact person typically is the hospice nurse assigned to you. Also, the hospice’s medical director will be making decisions about what you’re eligible for. Example: Dialysis is considered a medical treatment, but if it relieves suffering, hospice may cover it.
How to choose a hospice-care provider: Investigate more than one hospice provider by phone before deciding on one. Each company has “intake” personnel to take down your information as well as answer your questions, such whether there’s 24-hour access to services and how the facility or person determines your care needs. Important: Choose a hospice company that states that you’ll only have one or two points of connection, typically hospice nurses, so that those caregivers get to know you and you feel as though you’re really being heard.
Word of mouth is a good way to narrow your choices—talk to friends, family, neighbors and people at your church or synagogue who have had firsthand experience with a family member in hospice. They even may be able to recommend a hospice nurse. Also: Care from privately owned or, better yet, family-owned service provider often has a better “feel” than those run by corporations.
Once you choose a provider to pursue, a representative will do an in-person evaluation—basically, an interview with the patient. The hospice director will determine if you’re an appropriate candidate and what care orders would be written for you.
Important: Your hospice nurse is not going to be there 24/7 and doesn’t provide services for activities of daily living that a home health aide does, such as helping you bathe or dress. That being said, hospice workers will increase their engagement with the family and the patient as his health deteriorates or worsens. Hospice is always present or available around the clock (as preferred) when the end is near.
A Bridge to Finding Care
If you’re starting from square one, with no direction from your primary care doctor and no personal recommendations, search for a patient advocate in your area. Patient advocates are professionals, including care coordinators, case managers, nurses and social workers, who can make recommendations and help you vet providers of palliative care and hospice care. Many have a broad background in elder care and can give suggestions on how to improve your home environment for comfort and safety. Find patient advocates near you at Greater National Advocates (GNANow.org) or by contacting your state government’s health information web page.
