**6. Help from the doctor: hospice and palliative care**

#### **6.1 Hospice is open to all**

Any patient diagnosed with terminal cancer and worried about the possibility of a declining quality of life deserves hospice care. Hospice in the USA is a Medicare benefit open to any Medicare subscriber within 6 months of the end of life. US hospice documents [8] say, "Hospice care is to relieve pain and other symptoms related to my terminal illness and related conditions … The focus of hospice care is to provide comfort and support to both me and my family/caregivers." Mission Hospice, a typical US hospice, says that the primary goals of hospice care are to: "Relieve the physical, mental, emotional and spiritual suffering of our patients and those who care for them, promote the dignity and independence of our patients to the greatest extent possible, and support our patients and their families in finding personal fulfillment as they deal with end-of-life challenges." Palliative care—a generic term for medical care aimed at comfort and not cure—includes hospice care, but the generic term is not specifically limited to the terminally ill.

Hospice care is provided by specially trained nurses in homes or in facilities, with assistance from certified nursing assistants, social workers, spiritual counselors, and supervising hospice physicians. Most care is provided in the home. Hospice includes access to the best and most effective pain medication and symptom relief available anywhere, and hospice patients can be confident that pain or distress will be promptly treated and kept under control.

For several decades, hospice served primarily people with cancer, though that has shifted [9] in the last decade to the point where non-cancer diagnoses outnumber cancer four to one. In 2019 slightly more than half of Medicare patients who died were enrolled in hospice at the time of death. Average length of stay was 92.6 days, with median length of stay 18 days. Most of these days were in Routine Home Care, provided in a patient's own home or an assisted living facility, nursing home, or other congregate living facility. By 2019 there were 4840 Medicare certified hospices in operation.

The American Academy of Hospice and Palliative Medicine, which does not support legalizing PAS, recommends a 5-step approach to understanding requests for PAS, ending with a commitment to the patient to work toward a mutually acceptable solution for the patient's suffering. In situations where unacceptable suffering persists, they recommend discontinuation of potentially life-prolonging treatments (steroids, insulin, oxygen, dialysis, or artificial feeding or fluids). Consider voluntary stopping of oral intake (see VSED later in chapter). Finally, consider deep sedation (sometimes called, confusingly, palliative sedation), potentially to unconsciousness, if suffering remains intractable and severe [10].

#### **6.2 How to choose a hospice**

Most people have a choice of more than one hospice. How do they know which to choose? We suggest they interview representatives before making their choices, asking especially about how the hospice approaches pain relief, loss of function, anxiety, nausea, or other things they think might be troubling. Ask what some other patients have done to keep living lives that are rewarding. Ask especially about who will come to see a patient at night or on a weekend when the patient is having trouble or in pain. Will a nurse come see the patient? Is there a doctor on call, readily available? Is there a pharmacy readily available? Does the pharmacy deliver, so the patient will not be left alone while a caregiver is picking up medications?

#### **6.3 The hospice inpatient unit**

Ask whether the hospice has an inpatient unit or a place patients can go if they are too sick to be taken care of at home. Inpatient units in the United States are generally not for permanent residence, but for access to care when control of pain or symptoms needs full-time attention. Can a patient in overwhelming pain and distress receive deep sedation, in which patients are given as much medication as it takes to make them comfortable, all the while being carefully watched? True deep sedation, also called palliative sedation, for a suffering patient may require that the patient become unconscious before suffering is relieved. If the patient's pain and symptoms continue to need deep sedation to unconsciousness, comfort at this level may have the unintended effect of reducing a patient's ability to eat or drink. A deeply sedated

patient may die painlessly of dehydration after several days of unconsciousness. Comfort, not death, is the aim of deep sedation, but death may come to a very ill patient who is comfortably sedated. Deep sedation, though rare, is best managed in an inpatient hospice unit, though unique circumstances might make it possible at home.
