Informational Guide to Choosing the Best Hospice Care
What is Hospice Care?Hospice Care Definition
Curative treatment is an approach in which the goal is to cure the disease and to prolong life at all costs.
Palliative care is not curative in nature but is designed to relieve pain and distress and to control the symptoms of the disease. Symptoms that palliative care focuses on relieving include: pain, nausea, vomiting, constipation, anorexia, malnutrition, dyspnea or air hunger, psycho-social and spiritual issues, weight loss, dehydration, weakness, risk for skin impairment, depression, Sleeplessness and insomnia.
Patient and Caregiver Education
The way hospice care is planned should affect the patient and caregiver in an honest and straightforward method. It is thought that the fear of the unknown is always greater than the fear of the known. Educating the caregiver in symptom management, hands-on care of the patient, caring for body functions, and teaching regarding the signs and symptoms of approaching hospice patient are important to relieve fears.
How to Initiate Hospice Care
To initiate hospice care, the attending physician must certify that the patient’s illness is terminal and that the patient has a prognosis of 6 months or less to live. The patient must be willing to forego any further curative treatment and be willing to seek only palliative care. The patient and caregiver must understand and agree that the care will be planned based on the comfort of the patient, and that life-support measures may not necessarily be performed. The patient and caregiver must also understand the prognosis and be willing to participate in the planning of the care.
Admission to a hospice program is the decision of the patient and their family, because not all people need or desire hospice care. Autonomy is one of the attributes of quality of health care. The patient or family should be the center of all-important decisions taken in regard’s to the patient’s care, and there shouldn’t be any decisions made without consulting the patient or their family first.
Objectives of Hospice Care
Managing symptoms and improving the quality of life without life prolonging measures is the main objective of hospice care. Allowing the patient and caregiver to be involved in the decisions regarding the plan of care is a primary aspect of hospice care, as well as encouraging the patient and caregiver to live life to the fullest. Other objectives include: providing continuous support to maintain patient/family confidences and reassurances to achieve these goals, educating and supporting the primary caregiver in the home setting that the patient chooses, and providing a clear understanding of death related issues as it affects much on the performance of caregivers and the quality of hospice care.
81 million children in the United States require pediatric hospice care. In the United States alone, there are 2.5 million deaths annually. About 50,000 deaths are pediatric 0-19 (2.2%). Children represent 25% of the US population. Half of childhood deaths are in the first year of life, while half of infant deaths are in the first month of life.
Pediatric Palliative Care Diagnosis
There are conditions for which curative treatment is possible but may fail. The following are common diagnosis in children, which make them eligible to receive hospice care.
• Genetic/Congenital (40%)
• Neuromuscular (40%)
• Oncologic (20%)
• Respiratory (12%)
• Gastrointestinal (10%)
• Cardiovascular (8%)
• Advanced or progressive cancer or cancer with a poor prognosis
• Complex and severe congenital or acquired heart disease
Models of Care
Hospice care can be provided in the following settings and situations:
• Inpatient consultation palliative care teams
• Inpatient palliative care
• Home hospice
• Perinatal and neonatal hospice
• Concurrent care
Hospice Family Support-Know What Hospice Provides
Hospice care includes a diverse range of services and forms of medical care. The care is done through daily activities to minimize the stress for patients and their families. Among its major responsibilities, the interdisciplinary hospice team manages the patient’s pain and symptoms. They also assist the patient with the emotional, psychosocial, and spiritual aspects of dying.
The interdisciplinary team provides the necessary drugs, medical supplies, and equipment, and they instruct the family on how to care for the patient outside of the hospice. In addition, they deliver special services like speech and physical therapy when needed. They also make short-term inpatient care available when pain or symptoms become too difficult to treat at home, or when the caregiver needs respite. And lastly, they provide bereavement care and counseling to the surviving family and friends of the patient.
A Great Team Can Make the Difficult Time Easy
Hospice care has diverse aspects and it requires a wide range of services. A multi professional health team works together in caring for the terminally ill patient. They develop and supervise the plan of care in conjunction with all of those involved with the care. The interdisciplinary team considers all aspects of the family unit, providing support to both the dying patient and to the caregiver. The family is included in all decisions and care planning because the care provided is patient-centric.
Every hospice should have a doctor of medicine or osteopathy. They are known as the medical director and they assume the overall responsibility for the medical component of the hospice patient’s care program. The act as a consultant for the attending physician, and they serve as a mediator between the interdisciplinary team and the attending physician. The medical director plays a major role in creating successful teamwork.
Every hospice should have a registered nurse who coordinates the implementation of the plan of care for each patient. They are in charge of performing the initial assessment, admitting the patient to the hospice program, and developing the plan of care along with the interdisciplinary team. The nurse coordinator also ensures the plan of care is being followed, and they coordinate the assignments of the hospice nurses and aides, facilitate meetings, and determine the methods of payments. The nurse coordinator is vital in controlling the quality of care.
Social workers evaluate and assess the psychosocial needs of the patient. They assist with community resources and filing insurance papers. They also support the patient and caregiver with emotional and grief issues. In addition, social workers assist with counseling when communication difficulties are present. The role of social workers helps in bridging the gaps between the patient family and the hospice company.
Spiritual coordinators must have a seminary degree but can be affiliated with any church. The spiritual coordinator is the liaison between the spiritual community and the interdisciplinary team. They assist with the spiritual assessment of the patient, and they work closely with the family to maintain their beliefs. They also develop the plan of care regarding spiritual matters. In addition, they assist the patient and caregiver in coping with fears and uncertainty. Lastly, they assist with funeral planning and performing funeral services. This role is very important for maintaining the public image of the hospice company.
The volunteer coordinator must have experience in volunteer work. They are responsible for assessing the needs of the patient and caregiver for volunteer services. They provide companionship, caregiver relief through respite care, and emotional support. Volunteers may read to the patient, sit with the patient, or do grocery shopping or yard work. Volunteers can improve the quality of life by spending more time on things, which are not directly related to medical care.
This position requires a professional who has experience in dealing with grief issues. They assess the patient and caregiver at admission to the hospice program and identify risk factors that may be of concern following the death of the patient. They follow the plan of care for the bereaved caregiver for at least a year following the death. They may also provide counseling or refer to other counseling resources.
Every hospice should have a pharmacist who must be a licensed pharmacist and must be available for consultation on the drugs the hospice patient may be taking. The hospice pharmacist evaluates for drug-drug or drug-food interactions, appropriate drug doses, and correct administration times and routes. The pharmacist is holds a key role in preventing medication errors, and providing patient counseling related to the medication errors.
The dietitian consultant should be a licensed medical nutritional therapist (LMNTs), and should be available for consultations and for diet counseling. The hospice nurse does nutritional assessments at admission; if nutritional problems are noted, the patient may be referred to an LMNT. This role is very important to improve the quality of life of the hospice patient.
Hospice aides should be certified nurse assistants who are supervised by the hospice nurses. They are responsible for following the plan of care developed by the interdisciplinary team. They assist the patient with bathing and personal care. They may also assist the patient/caregiver with light housekeeping services.
Other Service Providers
The hospice team may also have some other professionals if needed, which may include following positions:
· Physical therapist
· Speech-language pathologist
· Occupation therapist
These positions are not for rehabilitative services, but may be necessary to assist with improving the quality of life and care for the patient and caregiver.
The Hospice’s Responsibility After a Patient’s Death (Bereavement Period)
Hospice care does not end once the patient dies but usually continues for at least 1 year with bereavement support. Even though the family feels they have prepared for the death, facing the future without the person who died is difficult. The hospice staff also goes through a grieving period for each patient who dies. Each hospice provides support to their staff with support meetings and time to vent their feelings and to heal. This role of the hospice is vital to keep society stable and healthy after losing the people who have had an affect on people’s lives.
Ethical Issues in Hospice Care
Hospice care is complicated as it involves many ethical decisions throughout the care from the period of the enrollment of the patient to the end of their care. Ethical issues when dealing with hospice patients include withholding or withdrawing nutritional support, the right to refuse treatment, and do not resuscitate (DNR) orders. It is hoped that the patient’s wishes are made known in advance, such as a living will or an advance directive, or that a durable power of attorney has been appointed. It is imperative that the nurse is aware of the organization’s ethical policies and procedures so that any questions and concerns may be addressed appropriately and correctly.
Quality Care at the End of Life
It is the patient’s right to receive the quality care at the end of their life. Feedback from family members, patient, and employees, through surveys and inspections can be used as sources to develop and improve future hospice plans. It is extremely important to have a quality assurance program in place to minimize errors.
Hospice Performance Reports
The National Summary of Hospice Care published the following reports, which can be helpful in determining hospice performance.
NHPCO Performance Measure Reports:
NHPCO members also have access to national-level summary statistics for the following NHPCO performance measurement tools:
1. Patient Outcomes and Measures (POM)
•Pain relief within 48 hours of admission (NQF 0209)
•Avoiding unwanted hospitalization
•Avoiding unwanted CPR
2. Family Evaluation of Bereavement Services (FEBS)
3. Survey of Team Attitudes and Relationships (STAR)
Job satisfaction (hospice-specific)
Myths About Hospice Care
Hospice care really means giving up all efforts.
No, hospice care aims to provide comfort with dignity to someone who has been told that nothing else can be done. If the person has no chances of survival, there still is a chance that their quality of life can be improved. Love ones can be trained to handle stress and manage the changes going on. In a broader picture, hospice care minimizes the negative impact of death on society.
Hospice care only helps cancer or AIDS patients.
No, hospice care is not limited to cancer or AIDS. It includes many other life-limiting illnesses such as end-stage heart, lung, or kidney disease, or Alzheimer’s and other dementia's. It is always recommended for family members to consult a physician or hospice social worker to check if the patient in question qualifies for the hospice care.
A hospice is a place where people go to die.
It is true for inpatient hospices, since most of the hospice clients receive this service at private residences, assisted living communities, hospitals and long-term-care facilities. Some patients and family members prefer to stay home and some prefer to utilize hospice services in an institutionalized setting.
Receiving hospice care means that the patient is going to die shortly.
Hospice care does not accelerate the process of death and it does not help to prolong life. It only improves the quality of the patient’s remaining life. Many patients in hospice care get well enough to go back to their normal lives. On the other hand, there are many patients who have received hospice care several times in their lives. So, we cannot say that hospice care always means that patient is going to die.
Hospice care will not allow me to keep my physician
No, your physician can be involved in your care. Hospice physicians are typically the medical directors, and since they have legal responsibilities with the hospice, they must also be involved.
It is the doctor’s responsibility to recommend hospice care.
It is better that family members or love ones initiate discussion of hospice care because sometimes it upsetting for families if their doctor initiates this discussion. The patient himself, or family members, can consult hospice social workers to find out if the patient in question meets the criteria for obtaining hospice care.
Patients cannot quit hospice program.
No, patients can quit the hospice program that they are enrolled in if their condition improves enough for them to go back to their everyday lives. If for whatever reason their health deteriorates again, they can rejoin and receive the care that is necessary.
Patients can’t receive other treatments with hospice care.
Patients can receive other treatments if the care received improves the quality of life and does not prolong life.
A patient must have DNR to receive hospice care.
To be eligible for hospice care, patients have to be in the final stages of dying.
Hospice patients and families receive care for an unlimited amount of time, depending upon the course of the illness. There is no fixed limit on the amount of time a patient may continue to receive hospice services.
Reliable care at the end of someone’s life is very expensive.
Medicare beneficiaries pay little or nothing for hospice care. For those ineligible of Medicare, most insurance plans, HMO’s, and managed care plans cover hospice care.
Families are not able to care for people with terminal illnesses.
Family members are encouraged, supported, and trained by hospice professionals to care for their loved ones. Hospice staff is on call for the patient and their families 24 hours a day, 7 days a week, to help family and friends care for their loved ones.
Hospice care is just for the elderly.
No, hospice care is for anyone facing a terminal illness, regardless of age. Children, adults, and elderly patients all can receive hospice care if they meet the criteria of obtaining hospice care.
Hospice care ends after the patient’s death.
No, it does not always end after patient’s death. Bereavement services and grief support are available to family members for up to one year after the death of the patient. Many families face emotional issues after the death of loved ones. Hospice care is available to resolve those issues and minimize the stress. Some may say that hospice care has healing effects on the emotions of the patient and of their loved ones.
Hospice care is only for people who can accept death.
This is not necessarily true. The hospice patient must be aware that the care that the hospice is providing them can lead to recovery. While those affected by terminal illness struggle to come to terms with death, hospices gently help them find their way at their own speed. Many hospices welcome inquiries from families who are unsure about their needs and preferences. It is always recommended to contact your physician and hospice social worker to get advice. The hospice’s staff is readily available to discuss all options and to facilitate open family decisions.