Hospice Care Guide - Questions & Answers - Part Two

Pathways will be sharing the answers to some of the most commonly asked questions regarding hospice care beginning with our last post on April 18th.   

Can we visit our own doctor?

Yes.  Your primary care doctor remains your doctor under hospice care.  Your doctor gives us direction about your care.

Will someone come to stay with us?

No.  Hospice does not provide shift care or 24-hour care.  Team members make visits. But a nurse is available by telephone 24-hours a day and can come at any time if a visit is necessary.

Do I have to give up my medications?  

No.  Hospice will pay for your medications that are related to the terminal diagnosis.  If there are medications that hospice does not cover, you can continue to get them and take them as you always have.

How will hospice manage pain if it occurs?  

Hospice usually treats pain aggressively.  We know that pain interferes with eating, sleeping, visiting and general quality of life. Uncontrolled pain can also shorten life.

The patient and family are always in control of their care and can decide how they want to treat pain.

Will my loved one be asleep all the time?   

Not usually.  Some diseases cause the patient to be less alert.  If pain is severe, pain medicine may make a patient sleepier than usual for two or three days, then they will be as alert as the disease lets them be.

Does hospice do anything that will make my life shorter or longer?    

No.  Hospice tries to improve life in the final months or weeks, but does not try to shorten or lengthen life.  Research shows that with the extra care from hospice people who go on hospice usually live longer than those who do not.

What about help with practical things like grocery shopping?   

You can have a volunteer if you like.  Volunteers can help you with practical matters such as shopping, or they can stay with your loved one while you go out.

What if caring for my loved one at home becomes too much for me to do?    

If you feel you cannot continue caring for the patient at home, the hospice social worker can assist you to find a skilled nursing facility or residential care facility.

Be sure to check back in with us next week for the next part of our blog series on commonly asked hospice questions and answers.  

At the end of the blog series we will post a downloadable PDF with all of the questions and answers covered in this blog.

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.  

Research Confirms Many Live Longer with Hospice and Palliative Care

Higher Quality of Life Reported By Palliative Care Patients, Study Reports

A recent study published in the New England Journal of Medicine found that among patients with non-small-cell lung cancer, those who received palliative care lived, on average, almost two months longer than those who received standard care. Researchers also found that the patients receiving palliative care reported a higher quality of life through the final course of their illness.

They also found that when patients received palliative care services, they were more likely to elect hospice services. "With earlier referral to a hospice program, patients may receive care that results in better management of symptoms, leading to stabilization of their condition and prolonged survival," wrote the authors of the study released August 18, 2010. 

Pathways Provides Palliative Care

Pathways has a unique and vibrant Palliative Care program that is provided through Home Health. The criteria are that the patient has a prognosis of 12 months or less, has a skilled need (such as symptom management), and that he or she finds leaving home a considerable and taxing effort. (Patients may occasionally visit the barber, attend a special event, go for a drive or attend religious services and still be considered homebound, thus meeting the CMS criteria.) Patients may be receiving active, curative treatment simultaneously with Palliative Care. 

“There’s an inaccurate perception among the American public that hospice means you’ve given up,” said J. Donald Schumacher, president and CEO of the National Hospice and Palliative Care Organization. “Those of us who have worked in the field have seen firsthand how hospice and palliative care can improve the quality of and indeed prolong the lives of people receiving care.” Schumacher added that “The time to learn about these services is before a person is in a medical crisis. Patients and families must learn about these options of care as soon as possible.” 

A Growing Body of Evidence

A 2004 study found patients with 16 of the most common terminal diagnoses lived around 20 days (Journal of Pain and Symptom Management, September 2004). In 2007 a study of 4,493 patients found patients lived an average 29 days longer with hospice (JPSM, March 2007). This latest study adds to the body of evidence showing that many patients live longer with hospice and palliative care, and as a rule both patients and surviving families report better quality of life.