What to Know About Palliative Care

Reviewed by  
Caregiving 101

Top Takeaways

 

  1. Palliative care provides support to people suffering from life-threatening illnesses.
  2. Acknowledge that end-of-life decisions are emotionally complicated for you as the caregiver and your loved one.
  3. As a caregiver, you can help your loved one by educating them about these services and respecting their decision.
  4. The support of palliative care encourages families to spend quality time together.

 

Intro 

 

As a caregiver, you face numerous challenges in deciding on the best and most appropriate care for your loved one. It is human nature to work towards recovery and rehabilitation after an injury or coping with a chronic medical disease.

One of the hardest decisions to make is when you, as a caregiver, and your loved one choose to accept comfort care over aggressive treatment. The term palliative care is probably familiar to you. Palliative care can greatly benefit you as a caregiver and the person you are caring for, but how do you know it is time for Palliative care? Transitioning to comfort care is a very personal decision, and we can help you through the process.

 

What to Know About Palliative Care

 

Palliative care is specialized medical care for people with serious illnesses, such as cancer, dementia, COPD,  and kidney or heart failure. Palliative care is a philosophy of care that affirms life but accepts death as a normal process. Your doctor may refer you to a Palliative care team. Palliative care:

  • Honors the patient as the driving force for decision making
  • Emphasizes relieving pain and focusing on the quality of life as defined by the patient
  • Educates the patient on choices for medical care
  • Supports treatment for a patient’s medical condition if that is what they want
  • Provides a team of specialists including physicians, nurses, chaplains, social workers, and nutritionists
  • Is generally covered by Medicare, Medicaid, and other insurances

 

What Day to Day Care Looks Like on Palliative Care

 

Palliative care’s approach is to provide care where the patient is. That could be at home, in the hospital, or an outpatient clinic. The care itself is not unlike standard medical care except that the focus is on symptom management and patient-centered directives. All palliative care services are provided by an interdisciplinary team directed by a palliative care physician. 

 

What Are the Costs of Palliative Care?

 

Both Medicare and Medicare Advantage Plans pay for palliative care.

 

Medicare

 

  • Medicare Part A: Covers inpatient care and skilled nursing care that a person may need from palliative care professionals. It also covers time-limited home healthcare and rehabilitation services.

  • Medicare Part B: Covers mental health counseling for the person and their family, outpatient therapy services like physical, occupational, and speech therapy. Part B also pays for doctor’s outpatient visits and treatment and some durable medical equipment. 
  • Medicare Part C: Medicare Part C plans, also called Medicare Advantage plans must offer the same benefits and services as original Medicare plans. Part C plans may have prescription drug plans that pay for medication and other services such as help with personal care needs. 

 

Medicaid and Private Insurance

 

Both Medicaid and private insurance pay for palliative care. Medicaid eligibility requirements vary by state, so you will want to check your Medicaid plan to see what is covered. The same holds for private insurance. Plans differ widely, so to ensure that you are covered call your plan to inquire about coverage details.

 

What Are the Gaps in Coverage with Palliative Care?

 

Families are often dismayed to learn that palliative care is not comprehensive. If your loved one requires assistance with activities of daily such as bathing, dressing, eating, or transfers, palliative care does not provide this. In these cases, family caregivers or paid caregivers have to do this work. 24-hour nursing is also not available unless you are in skilled rehab or the hospital. 

 

How to Decide When it is Time for Palliative Care

 

Let’s look at what to look for and discuss with your loved one when deciding on palliative care. Palliative care is flexible, so you can change your mind at any time and opt for aggressive traditional medical treatment or transition entirely to hospice. 

 

  1. Your loved one has a serious illness that requires ongoing treatment and management.
  2. You and your loved one want the option of treatment 
  3. Your loved one expresses a desire to focus on the quality of life and reduce medical appointments 
  4. Symptom management is important to your loved one. Symptoms that can be improved by palliative care are pain, nausea, depression, fatigue, sleep problems, constipation, and appetite issues.
  5. Your loved one is still deciding whether they want hospice care and prefers to try palliative care first.

 

Palliative Care for You and Your Loved One

 

Palliative care acknowledges and supports a person’s decision to focus on the quality of life while coping with a terminal condition. You can help as a caregiver by following these steps:

  • If possible, do advance planning, including  a living will, before your loved one needs it
  • Acknowledge what your loved one has been through. If they want to continue to pursue treatment, that is their right.
  • Share your concerns and offer information about palliative care. Address any questions and fears.
  • Talk about options together in a collaborative and respectful way 
  • Be flexible and accept that your loved one’s decisions may change frequently
  • Appreciate the time you have together

Acceptance of the end of life is a uniquely emotional and spiritual journey. Knowing what to focus on and how to honor your loved one’s wishes will make the experience one that you both can respect. 




Amanda Lambert

Amanda Lambert is a nationally certified Care Manager and a member of The Aging Life Care Association. She has 25+ years oof experience working with elders