How do I deal with a hospice nurse who isn't as knowledgeable as I'd like?

2 answers | Last updated: Oct 25, 2016
A fellow caregiver asked...

We brought my mom home from the hospital on January 6th with hospice care. She has very damaged lungs from COPD and severe congestive heart failure. The hospice nurse comes twice per week. I am concerned that she is not as knowledgeable as needed. How can I find out? What are my options? We don't have the funds to hire private nurses.

Expert Answers

Audrey Wuerl, RN, BSN, PHN, is education coordinator for Hospice of San Joaquin in California. She is also a geriatric trainer for the End-of-Life Nursing Education Consortium (ELNEC), which promotes education in geriatric nursing and end-of-life care.

Sometimes, families have not had hospice thoroughly explained to them. Some expect more interaction by the nurse, social worker, or hospice aide than the benefit covers. While your mother's nurse comes twice a week now, that could change as her disease progresses. Usually, hospices try to arrange nurses and social workers they feel could best meet the particular patient's needs. Sometimes, this "match" is not right; and, letting the hospice know can correct the problem. I often tell families that hospice is supportive care wherein your loved one is pain and symptom managed, and families are educated regarding the care necessary to keep the person comfortable.

When choosing a hospice it is important to know if they are Medicare certified; most hospices are, and further, some are accredited by the Joint Commission. This agency oversees the care provided by the hospice, and is not required. Know as JCAHO, it is the organization that regulates hospitals, nursing homes, etc. regarding patient safety and care. You didn't say if your mother's hospice is accredited, but if it is you can rest assured they have put themselves up for scrutiny of the highest order. And, even if it isn't, Medicare has very strict guidelines regarding care that patients/families can expect to receive. And, hospice nurses are highly trained professionals with excellent assessment skills, medication knowledge, and symptom management expertise.

In closing, I would like to say that COPD is a disease process that can have a long course. It can be trying for both patients and families. Please know that hospice care should always be compassionate, palliative care (comfort care) that allows the patient dignity, respect, and autonomy, or being in control of their own destiny. Hiring a private nurse may be counterproductive to what should be the goal now; because, the hospice nurse is the expert in end-of-life care.

I suggest that you talk with the Director of Nurses at the hospice and tell them how you feel. Patient care and family satisfaction is of the highest importance to all hospices"”so, please let the facility know your concerns.

Community Answers

Jenny seymour answered...

My father was admitted into the Hospice program thru VITAS in March, I have just recently found out that the nurses are constantly in contact with a doctor in their office as well as my father's primary doctor, and that if you call the main office that the Doctor will come and make a house call. I was in your position, Hospice is hard to understand they are their to make your loved one comfortable, we all understand this, but in my opinion they should be there to advise you of every thing that they see, what to expect next, etc., and this is what I received when the doctor came to visit.

I hope this helps, my prayers will be with you and your family.