Disadvantages to Hospice Care

Although it may seem ungrateful to provide criticism of the many benefits under the hospice umbrella, there are several points most people don’t know – but need to know -- about hospice. One important fact is that the patient will not see the hospice physician. All information is relayed through the visiting nurse. This information is only as good as the nurse’s communication skills and method for conveying such information. We had a recertifying RN who would visit the house with her laptop and the files the visiting nurses kept. Unfortunately, there were medications listed in dad’s profile that he had never taken or that had been discontinued over a year prior to her visit.

Another important note is that every patient enrolling in hospice should appoint an attending physician or nurse practitioner. The attending physician is selected by the patient and is independent of the hospice agency (and its bottom line). This trusted physician will have designated legal authority to intervene on the patient’s behalf should the hospice agency fail to provide sufficient or adequate care. Although the hospice agency is required to ask the patient if they would like to designate an attending physician, in our case, they did not. We added one sometime after signing with an agency who, unfortunately, was not meeting dad’s needs for pain management.

The patient, upon signing up for hospice with an agency, will be assigned to a team of providers including a physician, nurse, and home health aide. These are not chosen by the patient in any way. The team reflects the attitude of its members, and this overall attitude can be beneficial –or detrimental --to care. Complaints are difficult to address. There is no email capability available at our current agency, and any requests must usually be made through the office phone system. Some, if not most, nurses allow texting for faster communication.

Equipment is rented and must be returned when no longer needed. Incontinence supplies may not be of the best quality. However, our assigned nurse supplied bandages and even came daily to change them when needed.

Services, such as physical therapy, may be requested but not provided. We thought dad would benefit from some exercise instruction and, after the PT came to the house, we were told he did not qualify for such services. He was then referred to restorative therapy and again, we were told he did not qualify. When he had swallowing difficulties, we were told a speech language consult would not be provided. It is imperative to note that the hospice agency alone determines what is in the best interest of the patient, and this is based on the AGENCY’S perception of what will provide benefit to the patient. For most agencies providing hospice services,

prescriptions and medication are the treatment of choice, not therapeutic intervention.

The Center for Medicare Advocacy (Hospice patients’ rights enhanced by new Medicare rule. Center for Medicare Advocacy, 2018. Retrieved September 5, 2018 from http://medicareadvocacy.org.) published a list of Medicare Condition of Participants that specifies the rights of hospice patients regarding their care. These include the right to effective symptom and pain management due to the qualifying condition, involvement in the care plan and the ability to refuse care or treatment, choice of an attending physician, confidentiality of personal and medical information, freedom from mistreatment or neglect, and knowledge of services offered and provided by the agency.

Make a priority list of what issues you would like to be addressed when interviewing a prospective palliative care or hospice agency and ask specific questions about each item on your list. Keep the list and the answers you received from each agency you interview for comparison.