Hospice for the Terminally Ill and End-of-Life Care

Abstract

Care during the final phase of life can present unique challenges for the health care provider. Although there is a spectrum of options for home care, the most comprehensive service for patients with limited life expectancy is hospice. It provides a patient and their family with an interdisciplinary health care team that works together to create a cohesive plan for pain and symptom management. Hospice referral is initiated by a physician that certifies a limited life expectancy based on Medicare guidelines.

Regardless of the diagnosis, most patients evolve through a similar series of signs and symptoms as they near death. The delivery of nutrition and hydration becomes difficult, and in many cases, detrimental to the overall comfort of the patient. Traditional modes of medication delivery for symptom management can also become problematic, often requiring specialized knowledge of alternative modes or medications.

Appendices

Review Questions

• 1. An 83 year-old man with end stage COPD comes to your office to discuss goals of care. His breathing has deteriorated over the last few months, and he has been hospitalized four times this year. He states that he would like to avoid returning to the hospital if he were to get sick again and would like to focus on comfort. He heard that hospice can offer him the opportunity to have symptom management to focus on comfort for his remaining days. Which of the following describes the covered services and items he could receive?

  • (a) Daily in-home caregiver

  • (b) Room and board at a nursing facility

  • (c) Hospital bed, oxygen, and commode for home use

  • (d) Homemaking assistance with cooking and light housework

• 2. Which of the following statements regarding Hospice care is false?

  • (a) Hospice care includes coverage for durable medical equipment, medications, and home visits for pain and symptom management

  • (b) Once signed on to the Medicare Hospice benefit, patient visits to their Primary Care Physician (PCP) for a hospice related diagnosis are not covered

  • (c) Hospice care is revoked if a patient elects to go to the Emergency department for an acute health issue related to their hospice diagnosis

  • (d) In order to receive Hospice benefits, the patient must agree to “Do Not Resuscitate” Status

• 3. A 73 year-old patient with end stage dementia and failure to thrive on Hospice begins to stabilize. Her oral intake is fair with hand feeding, she has not had pneumonia or a urinary infection in over 1 year, and she continues to have periods of lucidity where she can hold a limited conversation. Which of the following actions is most appropriate?

  • (a) Discharge the patient from Hospice; she may re-enroll in the future as her condition progresses

  • (b) Keep her on hospice but provide her with a reduced number of nurse visits, as she is doing well enough with only a bath aid visiting weekly

  • (c) Keep her on hospice for a limited period of 1 month and monitor her for disease progression

  • (d) Discuss her case with her former primary care physician before making a decision

• 4. A patient with stage IV liver cancer is in under home hospice care, with her husband as her primary caregiver. She has intense pain and nausea, and is significantly encephalopathic and agitated. Her husband and nurse are having difficulty controlling her symptoms. Which of the following is false regarding treatment options?

  • (a) This patient could benefit from a home visit from the hospice physician for evaluation

  • (b) The patient could be transferred via EMS to the emergency department for a few hours of intensive symptom management while remaining on hospice care

  • (c) The patient would qualify for general inpatient care due to her refractory symptoms

  • (d) The patient’s uncontrolled symptoms qualify her for continuous nursing care in the home for continuous pain control and monitoring

• 5. What is the current average length of stay on hospice?

  • (a) 10–20 days

  • (b) 3–4 months

  • (c) Over 8 months

  • (d) 80–100 days

• 6. A 72-year-old terminally ill female is showing decreased awareness of his surroundings, decreased oral intake of solids or liquids, and is no longer able to get out of bed. The most likely explanation for this constellation of findings is:

  • (a) Loss of hope

  • (b) Impending death

  • (c) Depression

  • (d) Uremia

• 7. A 24-year-old palliative care patient with terminal breast cancer with metastasis to bone takes oral narcotics regularly for bone pain. The patient is no longer able to swallow. What is an alternative route of medication administration while under hospice care at home?

  • (a) Topical salicylates

  • (b) Transdermal scopolamine

  • (c) Transdermal buprenorphine

  • (d) Topical capsaicin

• 8. A 61-year-old male is in his final stages of death and now under palliative “terminal” sedation. The primary goal with this type of sedation is:

  • (a) Relief of intractable pain or suffering

  • (b) Hasten the onset of death

  • (c) Improved tissue oxygenation

  • (d) Reduction in opioid medication usage

• 9. An 87-year-old home hospice patient becomes increasingly less mobile and is physically limited to lying in her bed. A common complication of immobility while caring for a patient like this is:

  • (a) Joint laxity

  • (b) Hamstring hypertrophy

  • (c) Pressure ulcers

  • (d) Cerebral vascular accidents

• 10. A terminally ill patient has advanced disease due to pancreatic cancer. The patient is cachectic and now lost the ability to swallow. The patient’s family is concerned for the patient’s nutritional status. The following are reasons to withhold nutrition except:

  • (a) There are metabolic derangements associated with total parenteral nutrition

  • (b) Aspiration and infections are possible with tube feeds

  • (c) Starvation produces a euphoric state that increases comfort

  • (d) Forcing food and fluids will help to prolong or enhance life

Answers

• 1. (c)

• 2. (d)

• 3. (a)

• 4. (b)

• 5. (d)

• 6. (b). While caring for someone with a terminal illness, the terminal phase of the illness can be one of the most challenging times. The terminal phase of an illness is defined as the time when a person’s disease process is incurable and their health deteriorates to the point where he or she is not expected to live more than a few days, weeks, or months. The signs and symptoms of impending death are often very similar, even in patients with very different terminal illnesses. Those caring for patients during this stage should be familiar with the common signs and symptoms of impending death so that he or she can educate the patient and caregivers about the dying process and support patients and caregivers through the patient’s death. With impending death, the patient has decreasing interest and awareness of his/her surroundings and a reduced desire or ability to move around. The patient will have a marked decrease in food or fluid intake and often develops difficulty with swallowing.

• 7. (c). Pharmacologic symptom management can improve the quality of life of patients with a severe life-limiting illness. Although pharmacotherapy is only one component of end-of-life care, ensuring timely access to needed medication is a fundamental component of effective palliative care with increasing importance as death approaches. The loss of an oral intake route is a possibility that can occur at any time; therefore, the need for an effective alternate route for administering medication may become more urgent due to the inability to swallow. Additionally, since parenteral medications may not be available emergently, medications delivered via alternate routes should be made accessible for immediate administration. Transdermal buprenorphine is now being prescribed in the USA, but was initially used in Europe and Australia for chronic and cancer pain management. Buprenorphine’s mixed agonist/antagonist activity, dosage ceiling, and high affinity to the opiate receptor limit its use to those patients who do not already require large daily doses of opioids. Thus, buprenorphine may not be an appropriate medication for some patients with advanced unremitting cancer pain. Transdermal scopolamine is effective for severe drug-resistant nausea and vomiting in advanced cancer. It is most appropriate for vestibular causes of nausea and vomiting precipitated or exacerbated by head or body movement, with or without dizziness. Topical salicylates and capsaicin are available in the US without a prescription, but neither has shown substantial efficacy in clinical trials, and both have the potential to cause serious adverse reactions. Accidental poisonings have been reported with salicylates, and concerns exist that capsaicin-induced nerve desensitization may not be fully reversible and that its autonomic nerve effects may increase the risk of skin ulcers in diabetic patients.

• 8. (a). The main goals of palliative care involve the relief of pain and suffering in the dying patient. Terminal/palliative sedation describes the use of sedative agents to treat pain or suffering in the dying patient when other treatment measures are ineffective. This type of sedation is used to relieve intractable symptoms in the dying patient, not to expedite the dying process.

• 9. (c). As a patient becomes progressively less mobile with advanced stages of his/her disease, there are numerous complications associated with immobility. Complications include muscle atrophy, constipation, joint stiffness and pain, urinary tract infection, increased clotting risk, and pressure ulcers. Pathologic fractures are not increased with immobility. Prevention of pressure ulcers can be maximized with the use of turning and positioning techniques.

• 10. (d). Starvation and dehydration are not caused by lack of intake but by the disease process itself. Providing or even forcing food and fluids will not prolong or enhance life and may be a burden or detrimental. A healthy individual has an anabolic metabolism, which can use nutrients to build and repair tissue. However, during the dying process, the body shifts from an anabolic to a catabolic state. It is this catabolic condition that leads to starvation and dehydration. This shift is a natural part of the dying process and occurs whether or not food and fluids are provided. Furthermore, there is a possibility of additional problems due to complications of central line infections and metabolic derangement associated with total parenteral nutrition (TPN). Even tube feeding is not without risks, which include dislodgement, infection, discomfort, and aspiration. It is often not realized that starvation produces a euphoric state that increases comfort. As the body uses fat as the main energy source and ketones build up, the resulting ketonemia causes euphoria.