Understanding Hospice at McLeans

The Granby Senior Men’s Breakfast recently welcomed Bonnie Lillis, LPC, McLean Spiritual and Bereavement Counselor and Lori Scudder, McLean Volunteer Coordinator.  Lillis and Scudder are dedicated professionals working with McLean Hospice.  They opened their presentation refuting some common hospice myths: 

Myth:  Hospice is only for cancer patients.  Fact:  Hospice is for anybody with a terminal illness,   be it Alzheimer’s, ALS, renal failure, multiple sclerosis, stroke, or cardiac conditions.    

Myth:  Hospice is a place where you go to die.  Fact:  Hospice is not a place; it is a philosophy of care.

Myth:  Hospice accelerates the dying process.  Fact:  Hospice does not accelerate or prolong life.  Interestingly, there have been studies that have concluded that people placed in hospice care often live longer than people with the same disease who are seeking active cures, primarily due to effective pain management. 

Myth:  Hospice means the absence of hope.  Fact:  The hospice attitude is that there is always hope until the last breath.  Hope is just redefined.  There is hope for a comfortable death and hope for connecting with family and friends.  There is the hope of being pain free and hope to experience the best quality of life that can be had for the days that are left. 

Myth:  Hospice care is expensive.  Fact:  Medicare hospice benefits cover just about everything including professional visits, medications, respite care and equipment.  Medicaid has a hospice benefit and many private health insurance plans also include hospice benefits modeled after Medicare.  Medicare does not usually cover room and board in a facility, except for symptom management that can’t be done in a patient’s home setting. 

Myth:  Medicare terminates at the end of six months.  Fact:  In order to be admitted to hospice, there must be a prognosis of less than six months to live given the normal course of the disease.   McLean Hospice care does not terminate at the end of the six month period.  If an illness progresses normally beyond six months, hospice care will continue if a patient continues to qualify for such services.  Now and then, it happens that a patient will benefit from hospice care to the extent that he or she becomes well enough to leave the program.

Following the common misperceptions of hospice, Lillis explained that hospice is a concept of care for the terminally ill with emphasis on compassion and quality of life.  The McLean hospice philosophy is that everyone at the end of life should be able to die in peace, have the right to die pain-free with dignity, to not die alone and to die with the highest quality of life during the end of their journey.  The McLean hospice team holistically addresses the physical, emotional, social and spiritual needs of patients so that they can fully enjoy the remaining days of their lives.   The team provides education for both the patient and family to reduce the anxiety, fear and uncertainty that accompanies the emergence of a dying process. 

A plan of care is developed for each patient that meets the individual’s need for pain management and symptom control.  The plan of care guides an interdisciplinary team of physicians, nurses, social workers, spiritual and bereavement counselors, home health aides, pharmacists and volunteers.  Patients retain their own physicians who, in partnership with the McLean Hospice Medical Director, provide education, direction and support.   

Nurses serve as case managers and are highly trained in palliative care, especially pain and symptom management.  They teach coping skills and educate the patient and family on what to expect.  They are proactive advocates for both the patient and the family.

Social workers also offer counsel on coping mechanisms and anticipatory reactions to loss, illness and death.  They assist with end of life planning, identifying community resources for financial and legal support.

Spiritual counselors help patients and families explore the meaning and worth of their lives and provide comfort for those in distress.  Patients are guided toward acceptance and peace in their journey.

Home health aides provide “hands on” care for the patient. They assist with activities of daily living and maintaining a clean and comfortable environment.

Pharmacists may review a patient’s medicine regime, inform the hospice team of possible drug interactions and consult on the best drug for a symptom or condition. 

Volunteers can be the heart of hospice and are from all walks of life.  Following intensive training, they are aligned with patients/families to offer a listening ear, friendliness, companionship, socialization and can help with minor household chores and errands.  Some volunteers offer special talents or complementary therapies such as Reiki, pet visits, or music.

Referrals to hospice can be made by patients, friends and families, attending and specialist physicians, hospitals and other facilities.  In order to be admitted to hospice, regulations require a prognosis of less than six months to live given the normal course of the terminal disease. The patient must not want to pursue any further active treatments or hospitalizations.  Both patient and family must be aware of the diagnosis/prognosis and agree with McLean’s hospice philosophy and palliative goals for ongoing care.  The patient’s attending physician must certify the patient is hospice appropriate and continue to write medical orders.  Lastly a primary caregiver must be available to help with care and decision-making.  

Hospice medical interventions focus on comfort over cure.  The hospice approach differs from the common medical practice whose goal is to prolong life and explore all treatment and experimental options.  This may involve treatment with its complications, sometimes sacrificing the patient’s quality of life.  Consequently, many die in precisely the way that they most fear, in pain and alone, after suffering aggressive but futile medical intervention.    In contrast, the McLean hospice program parallels the ideology of Dame Cecily Saunders, the founder of Hospice at St Christophers in England:  “You matter because you are.  You matter until the last moment of your life, and we will do all we can not only to help you die peacefully but also to live until you die.”

So, the question is, “What do you want the end of your life to look like?”    What do you want your loved one’s end of life to look like?  Is your choice to be kept alive for days hoping against hope for a turnaround in health or is your choice to be resting comfortably, pain free, with your family, and at peace with what is going on around you?