Hospice nursing presents specific challenges which require a multidiscipline approach to care. Healthcare professionals can feel uncomfortable discussing hospice care and the needs of the patient at end of life. Studies have shown that those physicians who discuss hospice alternatives with their patients have a higher referral rate to hospice care 1. Additionally, those patients who are referred to hospice care have a longer survival time than those not referred.2.
Moreover, the views on end of life care and the ideas surrounding hospice and the management of hospice patients represents a difficult balance in managing end of life scenarios. Patient needs, the challenges surrounding the care of a specific disease process along with co-morbidities, and the psycho social issues that encompass the dying process all represent the challenges the hospice nurse faces. The nurses must be attuned to many symptoms surrounding the hospice diagnosis and the co-morbidities, specific treatments, along with supporting and educating the family system. Following are two case scenarios which represent the challenging aspects of hospice care.
An 87 year old male resides in his home. He was referred to hospice for end of life care with a diagnosis of prostate cancer, colon cancer, and metastatic disease to his liver. Initially diagnosed in 2009, had chemotherapy and radiation with a colon resection with last treatment in 2013. Past medical history includes smoking two to three packs per day, COPD, bradycardia, pacemaker, frequent UTI’s with Clostridium Difficile (post-antibiotic therapy). Widowed with four children from first marriage he is married a second time for 6 years; wife is caregiver 24/7. A former veteran, he continues to smoke two to three packs per day and has daily alcohol consumption.
Patient requires considerable assistance to ambulate, has slurred speech, incoherent conversation, appears agitated, frequently drifts to sleep mid-sentence. Bilateral upper extremity tremors are present. He cannot follow commands and calls out loudly with pain in right shoulder. Skin is dry and scaly with lower extremity edema. Lungs have congestion with crackles at bases. He is incontinent of stool and urine, having frequent reoccurring phases of Clostridium Difficile post antibiotic therapy for UTI’s. Spouse wants him on a continuous antibiotic as she believes he “is better when he’s on the antibiotics;” additionally he only consumes limited food intake, but is supported with intake of supplemental liquid nutrition. Spouse will “add Scotch” to his liquid nutrition because he “is used to drinking daily.” Pain is uncontrolled; spouse is resistant to medication usage and will frequently change his regimen of medications alternating Dilaudid, Ativan and Haldol with occasional Morphine for breakthrough pain.
A 78 year old female resides in her home. She has extended family who care for her. Hospice diagnosis is nasopharyngeal cancer with lung metastases, diagnosed in 2014, for which she refused treatment. Past medical history includes smoker (one pack per day /28 years), hypertension, dysphasia, macular degeneration, and weight loss. Former retired teacher, recently she was having visual hallucinations of “half entities” which “floated in and out of her walls in her home.” Initially frightened by these visions, she was evaluated by an ophthalmologist and diagnosed with Charles Bonnet Syndrome. Charles Bonnet syndrome consists of “visual hallucinations seen in those individuals who have macular degeneration or have lost their sight, can be distressing but is usually not permanent.”3
Patient is awake and alert, pleasant, able to provide history and life review. She lives alone with her cat. Can answer questions appropriately, however will stop mid-sentence to indicate the “visitors” have arrived. Hallucinations are only visual and are non- threatening. At times, she will ask them to leave and according to her report many “go away for a while.” Family members and care givers are very disturbed by the” visitors” and the actions that the patient takes when they arrive. Prior to ophthalmology visit patient was frightened of hallucinations and would run from her home to escape the hallucination. Patient is requiring more care giver involvement to remain safely in her home. Oral evaluation reveals a large mass on the upper posterior palate. She is able to wear dentures at this time. Intake has become limited and swallowing more difficult due to location of nasopharyngeal mass. Nasal congestion and leakage noted. Gait is unsteady.
How Hospice Helps
First case scenario includes many challenges which include pain control, daily alcohol consumption, and family support. Since the spouse is the primary care giver, the team needs to gain confidence and trust in the delivery of medications. Because the spouse changes the routine of the medications, nonjudgmental communication is especially important. The goal is to keep the patient as pain-free and cognizant as possible, while delivering quality care and keeping the family dynamic in place. It would be important to note that the team counseled the spouse with cutting back the amount of alcohol placed in the patient’s daily consumption; however, we’re not advocating for stopping daily alcohol due to the risk of alcohol withdrawal. Conferencing with the primary physician and pharmacist providing a continuum of care in an attempt to avoid poly pharmacy is key in managing this patient.
SEE ALSO: Nothing Fake About Dying
Second case centers on the patient living alone in her home, experiencing hallucinations which have caused potential for danger, vestibular disturbances and oral consumption. Upon further referral this patient was sent to an ophthalmologist who confirmed the diagnosis of Charles Bonnet syndrome. The patient was placed on Risperdal, Haldol, and Klonopin to assist her coping with the hallucinations. The hospice team with not affected by the patients visions, but her family and friends were disturbed by them. Counseling and education along with acceptance of the patient’s perception of reality and the use of medications to control behavioral outbursts assisted the patient with acceptance of the hallucinations. The goal was to allow the patient to remain in her environment at the end of life. The vestibular disturbances continued and she was moved to a bed on her first floor to assist in keeping her safe.
Often the idea of transitioning patient into hospice care can be perceived as a “do nothing” approach. Patients enter into this phase of their life with multiple scenarios which can complicate the care provided. The team approach to care includes a close relationship between the doctor, nurses, social service, volunteers, and pharmacist. While the patient may be followed by the team, inclusion of the primary physician, outside agencies and support systems are paramount in providing end of life care. Improving the end of life experience is the common goal.
It takes a true team approach to assist in the transition of life.
- Lewis, R.,2013, Doctors Who Favor Hospice More Likely To Discuss It, Medscape Medical News, 6/11/2015, http://www.medscape.com/viewarticle/817874
- National Hospice and Palliative care Organization, 2010, Research Patients Live Longer with hospice and palliative Care, 6/11/2015, http://wwnhpco.org/press-room/research-shows-patients-may-live-longer-hospcie-and-palliative-care
- RNIB, Charles Bonnet Syndrome, RNIB/ Supporting People with Sight Loss, 4/22/2015,