Rebecca’s Story: Rebecca lived alone in a small cabin, tucked away in a remote mountain-top range, sharing her home for over 50 years with her husband until he died. She spent her days tending to her garden and cooking, resting when she got overtired from caring for her home and herself. She had no children, and her nearest neighbor checked on her once a week and took her to church.
Rebecca received her healthcare through a community-based home health service. She was a very private person, and withheld from her medical practitioners her discomfort from an open wound on one of her breasts, one that was eventually discovered and determined to be end-stage breast cancer. In time, her neighbor stopped visiting, saying she “just couldn’t watch” Rebecca suffer.
Her physician offered hospice services to Rebecca, but she did not accept them. Rebecca always believed “time will bring what time will bring” and she worried that hospice care meant either having to leave her home or having strangers “in and out” all the time. She was concerned about being given pain medications that would either slow her down, render her unable to take care of herself, or even hasten her death. She decided that she wanted no part of that, or any treatment at all, and her home health team respected her wishes.
Rebecca died shortly after receiving her breast cancer diagnosis. She was found alone, lying in her garden with her empty basket beside her.
Rebecca’s story highlights just a few of the misunderstandings that many have about hospice. The tragedy of Rebecca’s story is not that she died; it is that she died without the support of caring professionals equipped to offer and provide a whole host of services meant to ease the transition from life to death, not only for Rebecca but for her neighbor who seemed to deeply care for her.
The philosophy of hospice is to recognize that quality of life, peace, and comfort at the end of life should be the focus of healthcare when curing a patient’s disease is no longer possible (National Hospice and Palliative Care Organization). Hospice team members accomplish this by developing an interdisciplinary plan of care with the patient and their loved ones that enhances the patient’s quality of life by:
- Offering symptom and pain control
- Promoting comfort
- Exploring spiritual connection
- Providing psychological support
- Establishing connections for the support of daily life
- Creating the possibility for growth within the dying experience
- Continuing support for loved ones throughout the bereavement period
What Is Curative, Palliative, and Hospice Care?
Hospice care is an approach to caring for the terminally ill person that focuses on palliative, rather than curative care.
Curative care is healthcare that has the intent to heal disease. An example of curative care is chemotherapy, which is medication designed to kill cancer cells in an effort to “cure” the cancer.
Palliative care is care that focuses on symptom management, comfort, and quality of life for patients with chronic injury, illness, or disease such as stroke, heart failure, or cancer. It can be initiated at the time of diagnosis and delivered to patients during curative care efforts. An example of palliative care is therapy for a patient who had a stroke. It is different from hospice in that it can continue indefinitely, as long as the patient demonstrates a need.
Hospice care is end-of-life palliative care given to patients in their last 6 months of life, and to their loved ones during and after the dying process. Hospice assists patients through medical, social, physical, emotional, and spiritual support and services provided by an interdisciplinary team. Note that the team is interdisciplinary rather than multidisciplinary, which indicates a collaborative and consistent approach to the patient’s care by all members of the team.
A Team Approach
Hospice is a collaborative effort by an interdisciplinary team. Each member of the team has a crucial role to play in creating and implementing the plan of care.
Hospice care begins with the diagnosis of a terminal illness, made by a physician, that anticipates death within 6 months, although some hospice patients do surpass the 6-month mark and require recertification.
Nursing services are provided under the supervision of a registered nurse. Many hospices also hire licensed practical or vocational nurses, known as LPNs or LVNs, to supplement the care provided by the RNs, but there must be one RN identified as the case manager for each patient who coordinates care by all disciplines.
Medical Social Services
Medical social services must be provided by a qualified social worker, under the direction of a physician. Social work services must be based on patients’ psychosocial assessments, their needs, their families’ needs, and their acceptance of social services.
Bereavement counseling is a very important part of the work of hospice, and each hospice designs its own bereavement program. It is provided under the supervision of a qualified professional with experience or education in grief or loss counseling such as a social worker, chaplain, or bereavement counselor. Bereavement care can include such interventions as phone calls, mailings, home visits, and support groups.
Dietary counseling, when identified as a need in the plan of care, must be performed by a qualified individual, which includes dietitians, as well as nurses and other individuals who can assure that the dietary needs of the patient are met. Dietary counseling also assists family members in managing the expected decrease in or refusal of food and/or water by the patient at the end of life.
Spiritual counseling should be given according to the patient’s beliefs and stated preferences, and can include deep discussion and prayer. Spiritual counseling usually encompasses support during the dying process and after death, including special services to honor the deceased.
Physical, occupational, and speech therapy services must be made available to patients as needed. However, most hospice patients are usually too sick to benefit from these services, so each case must be assessed individually.
In the hospice setting, an aide or nursing assistant is often referred to as a hospice aide. The hospice aide is instrumental in communicating the patients’ needs to the nurse, especially regarding durable medical equipment, or DME, and changes in health status and ability.
Homemaker services may include assistance in maintaining a safe and healthy environment by tidying the patient’s living space, running the vacuum, preparing simple meals for the patient, or assisting with laundry.
Volunteers are an important part of the hospice team, providing support or participating in administrative roles. Every hospice must actively recruit and work to retain volunteers, and they must be oriented and trained in a way that is consistent with hospice industry standards.
The World of Hospice
There are many nuances specific to the world of hospice care that are probably unknown to most people. Hospice care includes preventing and relieving suffering, treating anguishing symptoms, offering spiritual connection, providing psychological support, creating a support system for daily life, and managing pain. It is delivered to individuals who face serious, complex, and life-threatening illness and symptoms as they near the end of their life. So, you see, no matter the individual or circumstance, hospice has immeasurable gifts to offer. Patients just have to say “yes”.
Like many, Mark Philbrick, was not familiar with Hospice until his family needed it. Listen to Mark share how his experience motivated him to make a major change and help others.
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