What Should Family Caregivers Know About Palliative Care?

May 2nd, 2018

By: Sharon Roth Maguire, MS, RN, GNP-BC, Chief Clinical Quality Officer, BrightStar Care

At age 92, former first lady Barbara Bush announced that she would no longer seek curative treatment for her heart failure and chronic obstructive pulmonary disease (COPD), which she had battled for quite some time. Rather, she opted for what she called “comfort care,” or a focus solely on pain and symptom management. Her choice of words really struck me: “Comfort care” is a great way to describe the essence of palliative care.
 
Palliative care has long been a part of end-stage cancer care. Today, it’s being offered to more people with conditions such as heart disease and stroke, just to name a few. In fact, it’s an important part of the care BrightStar Care nurses provide our clients. We are accredited by The Joint Commission, which means our nurses are held to a high standard of evaluating and tending to the pain and comfort levels of our clients.
 
Many caregivers and families are understandably confused by the term “palliative care.” It’s often mistaken for “hospice,” which is focused on end-of-life care. Let’s take a look at the differences and how a BrightStar Care nurse can support families faced with difficult care decisions.

Types of palliative care

Palliative care
Palliative care can be implemented at any stage of a disease. The goal is to reduce pain and provide a higher quality of life for people who are dealing with chronic or severe illnesses. Forms of palliative care can be given in the hospital and at home, and palliative care providers focus on managing symptoms such as:

  • Fatigue
  • Nausea
  • Pain
  • Shortness of breath

If a doctor suggests palliative care, that doesn’t mean they’re giving up on a loved one’s care or they can’t do anything further. It might mean they want to provide options to help your loved one feel more comfortable or better manage their pain. That said, hospice care is a type of palliative care, and that terminology often is what confuses people.
 
Hospice care
Hospice care focuses on providing comfort measures at the end of a person’s life. When treatments for cancer, heart failure, or another severe and chronic disease stop working, sometimes clients or families decide to stop treating the disease and focus solely on making the person who is dying as comfortable as possible.
 
Hospice care also can be provided in the hospital or at home. However, to qualify for Medicare reimbursement for home hospice, for example, a client must have a doctor’s note that they have less than six months to live. Hospice care truly is focused on care at the end of the client’s life and is tailored to what the client and their family decide together during end-of-life planning.

How a BrightStar Care nurse can help

Pain evaluation
Because of our accreditation by The Joint Commission, a BrightStar Care registered nurse will evaluate every client to gauge their overall comfort level due to joint pain, diabetic neuropathy, shortness of breath, or other troublesome symptoms at any stage of their disease. Comfort checks are included in every patient assessment, and when comfort needs are identified, we include it in the client’s plan of care.
 
Family support
We get to know our clients and their families very well as we provide care throughout the stages of a client’s chronic illness. It can be a challenging time for families when they are faced with decisions about palliative or hospice care because they don’t want to lose their loved one. But sometimes it’s the loved one who chooses to switch from focusing on a cure to enjoying whatever time remains with some degree of comfort care.
 
BrightStar Care registered nurses can provide emotional and psychosocial support for families in these trying times. We are well versed in these difficult circumstances, and we will be able to coach and support the family as to what to expect. And it’s important to note that the choice to pursue comfort care doesn’t mean all medical treatment will be stopped. We are aggressive when it comes to comfort, and that won’t change. What can change is how disease-related treatment needs are handled.
 
For example, if a client has COPD, they may sometimes experience dyspnea, or what we call air hunger. It’s a very uncomfortable sensation of not being able to breathe. If a client is undergoing palliative care, they’ll be given oxygen to ease the discomfort. If a disease-related need arises, it will be handled as laid out in their COPD care plan. If the client is in hospice care, however, they’ll be given oxygen, and disease-related needs will be handled according to the client’s end-of-life care wishes.
 
Care coordination with other providers
Many clients who choose palliative or hospice care have a large care team, including providers at the hospital, a Medicare home hospice team, or another in-home team for other health services. We often collaborate with these providers to provide a full depth and breadth of services and to continue supporting the client and their family. This process is called care coordination.
 
It’s vital that all of a client’s home health teams communicate regularly to provide coordinated care and not duplicate services. For example, with Medicare home hospice, many patients don’t receive around-the-clock care unless it’s medically indicated at the end of life. Sometimes families don’t realize this and may still want or need support from other in-home care providers when hospice isn’t there, which is where BrightStar Care can play a role.
 
If you are considering palliative or hospice care, talk to your BrightStar Care nurse about your options at home. Call 866-618-7827 or contact a BrightStar Care® home care agency near you to learn more.