About Hospice and Palliative Care for Patients and Caregivers

Author: D. M. Curran, MSN, RN, OCN

Many people struggle with the idea of hospice. The concepts of hospice and palliative care can be the cause of anxiety when dealing with a life-threatening illness or injury. Questions that people ask include: What is hospice? Isn't palliative care the same as hospice? When should I think of hospice? Am I giving up? Will hospice hasten my death? What are the benefits of hospice? Can I change my mind and come off of hospice? Can I continue treatment while on hospice? Can I bring up hospice, or do I need to wait for my doctor to discuss it? How do I discuss this with my family? Are there any benefits for my family with hospice? I don't have anyone to help me; is hospice care always at home? Do the nurses or aides stay 24 hours? What services does hospice provide? How long can I be on hospice? What happens if I live longer than six months; do I get discharged from hospice? What if my family member doesn't think they need hospice, or we don't want them to know they have cancer (or another terminal disease); can they go on hospice?

First, we should define some terms. Comfort care is care that seeks to comfort or reduce symptoms that are physical, emotional, and spiritual (Connelly, 2023). Curative care means the intent is to cure a disease or injury. Hospice is comfort care provided without curative treatment. The goal is to promote the best quality of life and control symptoms. Patients may choose this option because there are no curative treatments left or because they feel that the treatment is too toxic with little chance of benefit (Connelly, 2023). Therefore, patients cannot continue with curative treatments, such as chemotherapy or radiation, during hospice. However, depending on the hospice provider and insurance carrier of the patient, therapies such as chemotherapy or radiation may be allowed if they decrease the patient's symptoms. Palliative care is comfort care provided to patients who receive curative treatment and those who do not. Therefore, palliative care can begin earlier than hospice care.

Barriers to patients accessing palliative care include confusion about what it means and when to offer it. Patients can receive palliative care at any time during the disease, regardless of treatment. Patients should not need to suffer side effects of disease and treatment because their goal is a cure. Yet, far too often, palliative care is seen as something to be offered only at end-of-life. Palliative care provides symptom support for the patient to alleviate pain, difficulty breathing, nausea, emotional distress, etc., and supports the caregivers and family (Sheikh et al., 2022).

Barriers to accessing hospice services also stem from confusion over what hospice is and when to provide it. Studies show advantages for patients on hospice for at least six months (Sheikh et al., 2022). These benefits include the same benefits as palliative care and decreasing care costs for patients and insurers (Connelly, 2023). However, hospice also has a stigma attached related to the fear of discussing death. Nurses, doctors, patients, and family members can find discussing death distressing and try to avoid it. Thus, the hospice discussion occurs for the first time, days or hours before death in far too many cases, negating many benefits that the patient and family might have had. It may take a patient and their family or support system time after hospice is brought to their attention by the care team to decide to participate in such programs. The reasons for the reluctance can be varied. Often, a feeling of "giving up" is cited. However, "hospice gives the patient a voice and allows them to decide on a plan of care that is aligned with their values," according to Paradise & Carter (2023).

Discussing hospice can be challenging for all involved. Health team members can use tools and take classes to help them feel more comfortable with end-of-life discussions. Doctors and nurses can use the Serious Illness Conversation Guide (SICG) to help them with difficult conversations (Paradise & Carter, 2023). Patients and families do not need to wait for the healthcare team to bring up hospice. Discussing a patient's treatment goals can occur at any time and should be revisited and updated frequently. For example, Patient A may say at diagnosis that if the disease is not curable, the treatment should stop. At diagnosis, the doctor determines that the prognosis is good. However, after a year, the cancer returns. At this point, the patient, family, and doctor should discuss the prognosis and goals of treatment again. Goals of treatment should be reviewed regularly as patients' choices may change with increasing symptoms, upcoming life events (birth, wedding of a family member), and difficulties of treatment. Most hospices will not accept a patient (who is capable of choosing) into hospice if they do not agree to hospice or are unaware of their diagnosis. Another challenge is when a patient is ready for hospice services but is unsure if the family will accept the choice. In this case, having the healthcare team, nurse, social worker, chaplain, or doctor assist in the discussion may help.

Hospice provides many services and benefits. Patients live longer on hospice with a better quality of life (Paradise & Carter, 2023). For home hospice, patients will have prescription medications, medical equipment (hospital bed, walker, cane, etc.), and medical supplies (gauze, incontinence pads, etc.) to the home (Paradise & Carter, 2023). In addition, professional services such as 24-hour nursing support, physical therapy, chaplains, and bereavement support for family members after the death of the patient are (Paradise & Carter, 2023). However, it is essential to note that while nursing support is 24-hour, the nurses are not always at your home. Typically, the intake nurse will assess the patient's needs and recommend what to order regarding supplies and services to the hospice doctor. If needed, a nurses' aide will be assigned to come to the patient's home for a few hours a day, several days a week. Nurses will come to your home when needed, but the family is to care for the patient for the rest of the time. For some patients and families, this can be too burdensome to manage. The patient may not have anyone to assist them, or the caregiver may not be able to physically or emotionally deal with home hospice. In these situations, inpatient hospice may be an option.

Home hospice may not be available everywhere or may have limited beds available. Sometimes, inpatient hospitals or nursing homes provide hospice services or contract with hospice providers to care for hospice patients. Respite care may also be available for home hospice patients. Respite care is where a home hospice patient is cared for in an inpatient setting for a few days to give caregivers a break.

Two doctors must certify that a patient has a life expectancy of six months or less to have insurance cover the admission to hospice. A patient can be discharged from hospice if they receive curative care or live longer than six months and are no longer considered terminally ill (Sheikh et al., 2022). If a patient has lived past six months and is still determined to be terminally ill, they can continue hospice with periodic re-evaluations. Patients can always discharge themselves from hospice services.

Hospice and palliative care are services meant to enhance quality of life by controlling symptoms and providing physical, emotional, and spiritual support to patients and families. Fear and misconceptions can lead clinicians and patients to avoid these beneficial services. Communication and knowledge are critical to overcoming these barriers and expanding these services to those who could most benefit from them.

References

Hospice Foundation of America, Inc. (2023). What is Hospice?. Hospice Foundation of America. https://hospicefoundation.org/Hospice-Care/Hospice-Services

Paradise, L., & Carter, P. A. (2023). Choosing hospice is not giving up. Cancer Care Research Online, 3(3). https://doi.org/10.1097/cr9.0000000000000045

Sheikh, M., Sekaran, S., Kochhar, H., Khan, A., Gupta, I., Mago, A., Maskey, U., & Marzban, S. (2022). Hospice vs palliative care: A comprehensive review for primary care physician. Journal of Family Medicine and Primary Care, 11(8), 4168. https://doi.org/10.4103/jfmpc.jfmpc_2262_21