Hospice care offers patient-centered alternatives to traditional hospital care for those who are afflicted with a life-limiting illness and have been given a diagnosis of six months or less left to live. Making the decision to explore hospice care is not giving up on life or simply accepting death, but rather a way of obtaining the best possible quality of life during the final phase of life’s journey.
Exploring Palliative Medicine and Hospice Services
Death is not something that most people like to ponder, even though it is an inevitable part of life. Many people envision their final days enduring fear, pain and loneliness in the sterile confines of an impersonal hospital. Hospice services provide a compassionate, dignified alternative to traditional hospital care. The focus of hospice care is to make the patient as comfortable as possible, and to enhance his/her quality of life as much as possible during end-of-life.
Hospice services are generally indicated for those whose life expectancy is 6 months or less. The purpose of palliative care is to provide the patient with pain and symptom alleviation versus healing measures. Palliative medicine ensures that the patient remains comfortable, able to live out his/her last days to the fullest. Some traditional hospitals and nursing homes provide hospice services on premise, but usually health care providers offer hospice support in the home of the patient. This allows the patient to remain in a comfortable, familiar environment, around friends, family and loved ones who will provide more attentive care than hired staff can offer.
What Are Hospice Services and Palliative Care?
Hospice care takes all aspects of the patient’s life into consideration. In addition to physical care, the patient’s spiritual, emotional and social needs are also addressed. Hospice services are not reserved for any particular age group; any patient in the final phase of life qualifies for hospice care.
Though components of hospice care differ throughout the world, hospice care involves an Interdisciplinary Team (IDT) that may be comprised of the patient’s primary care doctor, a hospice physician, licensed practical and registered nurses, a case worker, a therapist, a counselor, a dietician, a pharmacologist, a minister, social workers and trained volunteers. The hospice IDT composes a care plan based on the patient’s needs for pain and symptom relief, and the team supplies all of the medication, equipment and therapies.
Day to day hospice care is typically provided by a family member under the supervision of the IDT staff. Members of the IDT perform regular visits to the patient’s home for patient assessment, ensure the care plan is properly followed, and to provide any additional services that may be required. These services may include services like dietary instruction and physical therapy. CNAs may be assigned to the patient to help with daily personal tasks, such as bathing. The hospice IDT staff stay on call around the clock. Spiritual and emotional support is provided by the hospice IDT based on the patient’s needs, beliefs and desires. Grief counseling is also provided to friends and family of the patient, as needed.
Hospice Care Misconceptions
Many people have misconceptions about hospice care. These misconceptions include:
MISCONCEPTION – Hospice care hastens death.
Contrary to the misconception that hospice care can hasten death, the fact is that hospice neither lengthens or shortens one’s life expectancy. Hospice care simply makes the patient as comfortable as possible, both mentally and physically, during their final days. Hospice enables the patient to enjoy a pain-free experience with family and friends during the final phase. In some cases, hospice care may extend the life of the patient.
MISCONCEPTION – Accepting hospice care is just giving up the fight.
Another common misconception is that it is better to fight for life than to settle into hospice care and simply give up the fight. In reality, many terminal patients experience some degree of stress relief by resetting their expectations to more realistic goals that can be achieved during their remaining time. Particularly if treatment for the patient’s condition is painful and unproductive, she may benefit more by treating the symptoms and managing pain.
MISCONCEPTION – Hospice patients cannot return to regular medical treatment should they show signs of recovery.
If a hospice patient shows signs of recovery, she can return to traditional curative treatment or even resume her normal daily activities. She can return to hospice care at a later time, if needed. The patient can resume or curtail hospice services at any time, even if her prognosis has not changed. She may also be admitted into the hospital for curative procedures that may improve her quality of life.
MISCONCEPTION – Patients can only receive hospice care for 6 Months
Medicare, as well as health insurance carriers in the US, require that the patient’s life expectancy is 6 months or less to begin hospice care. However, the terminal patient can receive care for as long as they need it.
Important Stages In Hospice Care
Hospice services are designed around the patient’s needs, beliefs and wishes, as well as the desires and needs of family and friends. Services may be restructured during the three stages of care. The three stages are:
- The last stages of the disease
- The process of dying
- The bereavement process
During the three stages of care, the IDT may provide some or a combination of these services:
Nursing Services
The nursing team monitors the patient’s medication and symptoms, and provides education for the patient and the family regarding the illness. The nursing team is also the link between the patient, the family and the primary care doctor.
Social Services
One or more social workers counsel and advocates for the patient and family regarding resources that may be available to them.
The Physician
The primary care physician approves the care plan and works with the family and the hospice service team. A hospice medical director may be available to the attending doctor, patient, and IDT for consultancy.
Spiritual Counseling
Spiritual counselors and ministers are available to meet with the patient and provide spiritual counseling, support and prayer at the home. Spiritual support may include assisting the patient in exploring what death means to her, taking care of any unfinished business, saying goodbye to friends and family, and performance of religious rituals.
Home Health Care Workers and Domestic Services
Home health care professionals provide personal daily maintenance tasks such as personal hygiene, nail care and shaving. Domestic aids may be available for meal preparation and light housekeeping tasks around the patient’s home.
Trained Volunteers
Compassionate volunteers have always been the mainstay of hospice services. These treasured team members are available to offer the patient and her family support and compassion, to listen when needed and to perform daily tasks, including running errands, babysitting and grocery shopping.
Occupational, Speech and Physical Therapists
These hospice therapists can assist the patient with developing new strategies for performing daily functions that may have become onerous because of the illness, such as dressing and walking.
Respite Care
The IDT team can make arrangements for respite care, giving primary caregivers a break from the daily responsibilities of caring for the patient.
Inpatient Care
The patient may need to be admitted into the hospital, a hospice inpatient unit or an extended care facility from time to time. For example, if the patient requires around-the-clock medical care or 24-hour IV medication administration, an inpatient facility may be a more appropriate choice. The hospice IDT will make all arrangements for an inpatient stay while remaining involved with the care of the patient and her family.
Bereavement Support
Bereavement is the emotional pain, grief and mourning all people experience following the death of a loved one. The hospice IDT will work with the patient’s family to assist and support them through the grief process. The IDT may dispatch a counselor or volunteer trained in bereavement support to visit the patient’s family several times during the first year. The team may also provide the family with letters, calls, access to support groups and referrals for professional services, if needed.
When Is The Time Right for Hospice Care?
As long as the patient is benefiting from curative treatment, hospice care should not be considered. However, there will come a time in every terminal patient’s life that the illness no longer responds to treatment. Continuing treatment may not be beneficial, or may even be painful for her. When hope for a full recovery is no longer present, perhaps it is best to focus energies on making sure the patient’s remaining days are quality time spent with friends and family. At this point in the patient’s illness, hospice care may be considered. Hospice care provides the patient and family with hope for a more comfortable, pain-free passing.
There is no specific signal that the time has come for hospice care; the circumstances for each patient are unique. However, a few signs that the patient may be ready for hospice care include:
- Emergency Room visits. The patient’s condition is stabilized, but the terminal condition continues to progress to the point of affecting the patient’s quality of life.
- Multiple admissions into the hospital during the past year. The patient has been admitted into the hospital, and symptoms are always the same or getting worse.
- The patient wants to remain in her home.
- The patient has decided to stop treatment for her illness.
Discussing Hospice Services and Palliative Care with Family Members
The topic of death is taboo among many families, and in Western culture as a whole. As a result, many patients hesitate to discuss hospice services and palliative care with family members. Even though most people would prefer to pass away in their own homes, most usually die in hospitals where family members have limited time with the dying patient. Many times, family members miss the final moments of their loved one’s life.
Many families wait until the very last days of the patient’s life to opt for hospice care, and then later regret not taking advantage of these services sooner. Hospice care provides more time for loved ones to say goodbye to the patient. It is important for anyone with a terminal illness to learn all about palliative care and hospice services, and then discuss their wishes with family members and loved ones prior to a medical crisis. When the family is aware of the patient’s wishes, they are free to spend the time caring for the loved one who is passing on.
Additional Resources For Patients
Coping with a life-limiting illness is tremendously difficult. Harbor Light Hospice can provide the compassionate care needed to enhance your quality of life as much as possible. For more patient resources, contact Harbor Light Hospice today or review our informational pages:
- Living During End-of-life
- Talking About Your Illness
- Talking To Your Children