Heart Failure & Hospice

Patients with congestive heart failure who elect hospice live longer than those who don’t.  These were the findings of a defining 2007 study published in the Journal of Pain and Symptom Management.  Other diagnoses also experience longer prognosis with hospice, but none longer than the 81 day extension of life in heart failure.

Many factors probably contribute to the increased longevity.  Hospice care increases monitoring in the home and gives psychological, emotional and spiritual support from friendly visitors.  This holistic attention may increase the desire to live and reduce the sense of being a burden to one’s family.

Skipping the ER

Heart failure is the diagnosis most commonly associated with hospitalization.  By some estimates, patients with heart failure are readmitted at a rate of nearly 50% within six months.  For some patients, knowing that they have 24-hour access to nursing advice and visits for management of symptoms gives them a welcome alternative to the emergency room. 

Who is Appropriate?

Medicare guidelines include:

• Patient is optimally treated with vasodilators or unable to tolerate them.
• Patients with conditions usually treated with surgery are either ineligible or decline it.
• Patient is Class IV on the New York Heart Association scale: unable to do any physical activity without discomfort and symptoms may be present at rest.
• If ejection fraction is available, 20% or less is appropriate for hospice.
• Co-morbidities play a large role in estimating prognosis.  The following co-morbidities support a prognosis of 6 months or less in conjunction with the conditions listed above:
• Symptomatic arrhythmias resistant to treatment
• History of cardiac arrest, resuscitation or unexplained syncope
• Brain embolism of cardiac origin
• Concomitant HIV disease

The extra time that hospice can give patients may be especially important to patients and families trying to find resolution and peace at the end of life.  

Questions to Ask Patients

• Do you have discomfort when physically active? or Does physical activity give you more discomfort?
• Do you get short of breath when you are lying down?
• Do you ever wake up at night feeling short of breath?
• When you are resting in a chair do you ever feel short of breath, perspire or have chest pain?
• Do you have any swelling?
• Do you need help with activities like dressing, bathing, walking or eating?

Supporting Documentation

• Cyanosis
• Rales
• Dusky nail beds
• Tachycardia or bradycardia
• Hyper- or hypotension
• Jugular venous distension
• Liver enlargement
• Cachexia
• Orthopnea
• Paroxysmal nocturnal dyspnea
• Decreased ejection fraction
• Weight gain due to fluid retention

This article was originally published in Pathways Physician & Health Professional Bulletin - Issue 24.  To download this issue in PDF format, or past issues, visit our newsletter archives online at www.pathwayshealth.org/publications.

When It Comes to Hospice, What's In It for Families?

We Know What Patients Get

The multiple advantages of hospice for the family are often lost in our natural concern for the patient.  We know the patient gets to stay at home with expert pain and symptom control as well as spiritual and emotional support.  We know they have volunteers for companionship and the safety and energy conservation provided when a home health aide assists with personal care.  And of course, there are the extras like massage with aromatherapy and music therapy.

“Unit of Care”

But how does the family benefit?  In the very unusual insurance benefit that is hospice, Medicare defines the “unit of care” as the patient and family—and family is loosely defined to include close personal friends and significant others.

Relief from Caregiving

One of the pluses caregivers love most is relief from being the caregiver.  It may be a couple of hours at the bank and beauty shop while a volunteer sits with the patient; it may be a 5-day paid respite stay in a skilled nursing while the caregiver recharges her metaphorical batteries; it may be a home health aide to do the physical care of bathing, dressing, shaving and linen changes several times a week; or it could even be a volunteer to grocery shop, run errands or walk the dog.

Emotional and Spiritual Support

A family at odds about healthcare goals may have a conference facilitated by a hospice social worker.  There is some financial relief as hospice assumes the cost of medications, equipment and supplies related to the terminal illness—even over-the-counter products and disposable briefs.  Then there is the assistance with funeral plans or insurance issues from skilled medical social workers—and sometimes a spiritual care counselor to preside over a memorial service or to pray with family members.

Easing the “Burden”

Those approaching the end of life often express regret over their perception of being a burden.  It is a relief to them to find out that family members can call hospice 24 hours a day to talk to a nurse or arrange a visit if needed, and that their families can have the same spiritual and emotional support that they get.  Patients are also comforted to know their family will have 13 months of support in their bereavement.

Time

And perhaps most important of all, because people who opt for hospice often live longer, patients and families have a few more cherished days or weeks to share this precious finale to life.

And Benefits for the Physician?

• Physicians get fewer calls at night and on weekends
• They have extra eyes and ears in the home. 
• Doctors get to be the heroes by giving patients and families better quality, and often quantity, of life.
• Physicians have hospice medical directors with whom they can consult on complicated symptoms.  

Spiritual Support in Hospice

Meaning of Life

When a patient may be facing the end of life, spiritual issues often begin to surface—people begin to ponder the meaning of their lives. Hospice is intended to care for not only the physical wellbeing of the patient, but the emotional and spiritual aspects as well. Toward that holistic end, Medicare mandates that hospices provide spiritual support (as they do in the military, another place where death is a possibility).

Spirituality is about those aspects of life that are not material; it is about relationships and finding meaning. Each of us has a spiritual side; some express it through religion, some in other ways.

But when faced with life-threatening illness, many experience feelings of fear, powerlessness, helplessness and despair, which are often expressions of spiritual distress.  Hospice spiritual care counselors are knowledgeable about a wide range of religious and spiritual traditions. They may be a presence in the home, or they may be the connection to the patient’s own faith tradition.
 
A Pathways Hospice Spiritual Care Story

Years ago, Pathways had a Vietnamese patient who had emigrated after the Viet Name war, in which he was an army colonel. His cancer pain was never seemed completely managed, despite multiple approaches.

One day he mentioned he wished he had not stopped practicing his Buddhism and wanted to pray with priest, however he was too weak to leave home. A hospice spiritual care counselor began networking until he found a Vietnamese Buddhist nun who came to pray with the patient.

Interestingly, not only did the patient’s anxiety decrease dramatically, but his pain was gone after these visits.

How Spiritual Support Can Help

Some of the many ways that hospice spiritual care counselors can help as requested by the patient or family are by:

• Giving unbiased spiritual or religious support for patients or family members
• Helping to identify and resolve spiritual concerns affecting the patient or family
• Exploring the “meaning of life” questions
• Administering sacraments
• Caring listening
• Contacting clergy or a spiritual leader of a specific faith community for the patient
• Exploring ways to prepare for “letting go” of this life in preparation for another
• Being another caring presence in times of need or distress

For more information about Pathways Hospice Services, please visit our website at www.pathwayshealth.org or email: info@pathwayshealth.org.