Against The Stigmas of Death: Hospice Care

Updated: Jun 28, 2020

By Sungwon Cho


Graphic by Senching Hsia, Graphics Editor

We all know that if life begins, death inevitably comes. This is accepted as one of the most basic facts of nature, yet even if we try to live life to the fullest, we tend to hesitate to talk or even think about death. According to Dr. Block, a chair of the Department of Psychological Oncology and Palliative Care at Dana-Farber, the average time when the conversation about end-of-life wishes takes place is approximately one month before death, which is too late when you need to discuss all the issues related to end-of-life care with your family and set up funeral arrangements.


End-of-life (EOL) care planning is one potential solution to target the grim perspectives and lack of conversation surrounding death. EOL care is generally defined as health care not only for those nearing the final moments of their lives, but also for those with terminal conditions. Most EOL care plans are both extensive and helpful, as they allow one to choose with dignity the ways in which he or she will finish life. For instance, contrary to the assumption that the elderly hold negative attitudes toward death, one qualitative study that surveyed 30 Korean elders revealed that they were more than willing to discuss death openly with healthcare professionals in the interest of both preparing themselves for fear of death and helping their family members cope with the uncertainty and depression that follow death.


In order to spread the concept of a dignified departure, the government should better inform citizens about special systems for those approaching death, intended to enhance happiness and satisfaction at the end of one’s life. In particular, the hospice system, yielding a plethora of advantages compared to other such systems, should be strongly encouraged. Before we delve into its benefits, let’s first look at its key details.


What is hospice care?

Provided by an interdisciplinary team, hospice care guarantees expert medical care, symptom control, and emotional and spiritual support based on the patient’s needs and wishes. Hospice care is also provided to the patient’s family even after the patient’s death. The main goal of hospice care is not to cure diseases but to maximize patients’ satisfaction with their lives. Hospice services are accessible to patients of all backgrounds and terminal conditions.

What types of services are provided by hospice care?

Hospice teams are responsible for:

  • Managing patients’ pain and other symptoms of illness

  • Offering medication, medical supplies, and proper equipment

  • Providing bereavement support and counseling to the family of the patient

  • Providing the proper level of care depending on the development of disease in a patient

  • Delivering special services such as speech and physical therapy

Where is hospice care provided?

Most hospice care is provided at patients’ homes, nursing homes, or residential facilities, while other hospice services are provided in freestanding hospice facilities and hospitals. The locations of hospice care differ based on the types of medical care needed for patients’ specific issues.


What benefits do patients receive from hospice care?

To satisfy the clinical needs of a variety of hospice patients with differing stages of diseases, four different levels of hospice care are provided: Routine Home Care, General Inpatient Care, Continuous Home Care, and Inpatient Respite Care.

1. Routine Hospice Care (RHC):

  • Most common level of hospice care

  • Provided at the patient’s residence

2. General Inpatient Care (GIP):

  • To treat extreme pains or other acute symptoms of illness that are not easily cured in the other facilities

  • Offer nurses who are always available for direct patient care

  • Provided at Medicare certified hospitals, hospice inpatient facilities, or nursing facilities

3. Continuous Home Care (CHC):

  • To provide care for a terminally ill patient at his or her home in the case of pain or symptom inflammation

  • Provide hospice services for 8 to 24 hours a day

  • Offer intensive nursing care combining caregiver and hospice aide services

4. Inpatient Respite Care (IRC):

  • To provide temporary relief to the patient’s primary caregiver

  • Provided in a hospital, hospice facility, or a long term care facility

  • Offer sufficient 24-hour nursing personnel such as nurse assistants and home health aides

What benefits do families receive from hospice care?

Counseling or grief support for the patient and loved ones is an essential part of hospice care. After the patient’s death, bereavement support is offered to families at least one year. These services can take a variety of forms, including telephone calls, visits, written materials about grieving, and support groups. Individual counseling may be offered directly by the hospice, or the hospice may make a referral to a community resource. Some hospices also provide bereavement services to the community at large.


Are there cases of success?

Patient 1: Edith's Story (age 95, pancreatic cancer)

Edith’s dream to live a celebratory life was accomplished thanks to her satisfactory stay in hospice care during the last few weeks of her life. Before she was diagnosed with advanced pancreatic cancer, she lived life to the fullest. Even at the age of 95, she still enjoyed parties with her friends and relatives on her birthday, regularly took aerobic classes, and loved card games. Even after being diagnosed with cancer, she continued her life in a cheerful, celebratory manner. Edith’s daughter June said she was relieved when her mom received hospice care, as the hospice team manager was always accessible; the hospice team manager was within 15 minutes of Edith at any time. Hospice services were tailored to Edith’s needs and wishes: the chaplain and nurse visited her regularly, and medicine for controlling pain was prescribed when she wanted. Her family was also satisfied with hospice care as it helped Edith remain positive about dying.


Patient 2: Riley’s Story (infant, congenital defect resulting in death soon after birth)

Riley, an infant, lived longer than expected thanks to hospice care, and his mother Kelly is thankful for all the services and love provided by the hospice care team. While others told her not to become too attached to Riley as he would die soon, the hospice nurse told her that Riley deserved affection. Kelly said that the hospice team members genuinely regarded Riley as an individual who deserved love and gave her trust that they would dedicate themselves to making Riley’s last moments of life happier.


The nurse and doctor offered the best care to Riley after careful examination of his symptoms, and they explained their diagnosis well to Kelly; she was well aware of and comfortable with the services that they would provide her son. The hospice team tried to give optimal services to Riley by figuring out means for both improving his quality of sleep and meals, and reducing his symptoms of pain. Thanks to the efforts and help provided by the hospice doctor and other team members, Riley lived for over a year, longer than his expected life of merely four months. The hospice team also helped Kelly deal with financial problems as they led the insurance company to mostly cover the payments for hospice care.


How should we talk about hospice care?

As the aging population continues to grow, we should encourage the early use of hospice care, which health professionals often call the gold standard of EOL care. However, due to negative myths surrounding hospice care, terminally ill patients and their families often react negatively when recommended hospice care treatment. Thus, the first step should be informing the public of the reality of hospice care.


Myth: Hospice care is only for those who are destined to die soon.

Reality: Receiving hospice care does not mean that the patient’s death is imminent. In fact, when patients receive hospice care earlier, they have a better chance to stabilize medical conditions, for hospice care manages the patients’ pain and addresses other symptoms of illness.


Myth: Hospice care means giving up one’s will to live.

Reality: Actually, hospice care helps the terminally ill enjoy the rest of their life and prepare for a dignified death. Of course, hospice services cannot completely block out patients’ fear of death nor remove relatives’ sadness from the loss of one of their loved ones, but such care at least gives hope and assurance that remaining days can be filled with joy, reminiscence, and reunion.


Myth: Patients can only receive hospice care for a limited amount of time.

Reality: Although hospice care is mainly for patients who are expected to pass within six months, it provides exceptions for patients who unexpectedly live for over six months. In such cases, patients can still be eligible for hospice care as long as the attending physician confirms that the patient is still terminally ill. Then, Medicare and most other forms of private insurance will cover the payment of hospice care.


Myth: A patient who decides to receive hospice care is not allowed to receive care from the primary care physician.

Reality: Hospice care stresses the significance of the continuation of patient-primary physician relationships by encouraging either office or home visits. While hospices work closely with primary physicians and get necessary information about the patient's medical condition, they can also help the patient continue to receive care from the primary care physician.


Myth: Hospice patients can no longer return to traditional medical treatment.

Reality: Patients are the principal decision makers of their treatment or care, so they always have the right to return to traditional forms of care, no matter the reason. If a patient’s condition improves significantly, he or she can be discharged from a hospice and be returned to regular treatments.


References:

https://en.wikipedia.org/wiki/End-of-life_care#United_States

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5511773/

https://www.nhpco.org/press-room/press-releases/new-facts-figures-report-1

http://palliativedoctors.org/stories/edith

http://palliativedoctors.org/stories/riley

https://amednews.com/article/20130318/profession/130319945/4/

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