Hospice and Palliative Care Focus on the Quality of Remaining Life

November is National Hospice Month. It is both a month of gratitude for me for such a valued service and a month of remembrance for someone I loved deeply.

 

Bonni and her dad

My father died in November 1999 at age 62. Shortly before his death, we were having one of those father-daughter conversations about my buying a car. The car in question was a used Ford Taurus—not the car of my dreams but serviceable for a young single parent and within my price range. My dad said to me, "Bonni, you've made a series of good decisions. I know you will continue to do so. I trust that and I trust you."

I bought the car and a week later my dad died. I have repeated that conversation over and over in my head since his death and, while I miss him, his expression of confidence in me has been a talisman in each subsequent decision that I have made in the ensuing years.

I have the honor of working for Franciscan Hospice and Palliative Care now. One of the things I hear from families, time and again, is the gratitude they feel for having had a chance to say (and do) the things that were so important to them before their loved one died. Saying "I love you" to those who matter most, expressing forgiveness to those who may need it, or receiving the forgiveness we might need at the end of our lives is often as critical to our well-being as the pain and symptom management the hospice team also provides.

What is hospice?  

The National Hospice and Palliative Care Organization describes hospice care as "the model for quality compassionate care for people facing a life-limiting illness. Hospice provides expert medical care, pain management, and emotional and spiritual support expressly tailored to the patient's needs and wishes."

In a nutshell, hospice focuses on the quality of remaining life rather than only extending life; therefore, hospice works to provide effective pain management and symptom control. Using a highly qualified, specially trained team of professionals and volunteers working together with the family and other caregivers, hospice meets patients’ physiological, psychological, social, spiritual and economic needs.

How do I access hospice?

Hospice care is provided based on a referral from your physician. While the hospice agency will work with your physician to assess whether you meet specific Medicare eligibility criteria for hospice, your physician primarily starts their assessment with the "surprise" question:  

"Would I, as the health care professional for this patient, be surprised if they were to die within the next six months?"

If they wouldn't be surprised, then it is probable the patient is dealing with a life-limiting condition.

Most hospices recommend the following five steps be considered when submitting a referral for hospice:

  1. Patient has a life-limiting condition – i.e., can the surprise question, "would I be surprised if this person were to die within the next six months?" be answered with "No, I wouldn't be surprised."
  2. Patient/family has been informed that their condition is life-limiting.
  3. Patient/family elects palliation of symptoms (easing the severity of a pain or a disease without removing the cause) versus aggressive—most likely futile—medical care.
  4. There is documentation of the clinical progression of the disease (multiple ER visits, lab studies, serial physician assessment, hospitalizations, etc.).
  5. Patient shows recent decline in functional status (progressive weight loss, etc.).

When should hospice be accessed?  

In my opinion, if you are medically eligible for hospice, you should seek the referral as early as possible. Remember, hospice uses a highly qualified, specially trained team of professionals and volunteers working together with the family and other caregivers, to meet the patient's physiological, psychological, social, spiritual and economic needs. Often people wait until the last few days of life to call in hospice and miss the opportunity to be supported as fully as they could have been if hospice had been involved for months and not just days.

How much will it cost me?

The Medicare Hospice Benefit was established in 1983 to provide Medicare beneficiaries with access to high-quality end-of-life care. In addition, most commercial insurances include hospice coverage. During the time of the referral, the hospice agency you choose will review your insurance coverage and talk with you about your specific plan.

What should I do today?  

Start the conversation about what you'd like done for you if you were faced with a life-limiting illness.

Navigating the health care system is becoming more complex. Unfortunately, the entry point to learn more about your health care coverage and options is often driven by a sudden event that compromises your ability to be thoughtful, objective, and proactive. I recommend these steps:

  • Schedule time to fill out and share with your family your advance directives (verbally and in writing). Ask them if they can support your wishes and choose an advocate to speak for you should you ever be in a position to not be able to speak for yourself.
  • Ensure that a copy of your advance care plan is on file with your physician.
  • Don't assume your provider will initiate the conversation—often they are uncomfortable about bringing up this topic, too.

Bonni Stratton was a presenter in the Home and Beyond: Long-term Services & Supports workshop at the 2014 South King County Care Transitions Conference.

Recently I spoke with a gentleman who was coming through our volunteer training in honor of his mother's life. He said the biggest gift his mother ever gave his siblings and him was her proactive planning around what she wanted when her life was coming to a close—both the clarity around her advance care directives and her funeral wishes, defined and in writing. He said it completely freed up the family from any fear that they wouldn't be doing what she wanted.

The hospice team worked closely with family members to ensure her wishes were put in place. His gratitude for the hospice team and its support of his mother's comfort in her final months was effusive. It is echoed by the hundreds of cards and letters we get from the families served.

Talk to your health care team or go online for information on how to start the conversation or make sure you have what you need to do your advance care planning. One site I recommend is The Conversation Project, which helps people talk about their wishes for end-of-life care. You can download their materials for free.

The National Hospice and Palliative Care Organization is an excellent resource to learn more about hospice and palliative care.

Contributor Bonni Stratton, MSW is a health care professional with interest in advocacy and community-health—especially end-of-life issues—who currently manages business development for Franciscan Hospice and Palliative Care. She participates on the South King County Care Transitions workgroup as well as the planning team for care transitions conferences in South King County.