Caregivers & Patients
What is hospice?
Hospice is a philosophy of care that focuses on improving the quality of life for people and their families faced with a life-limiting illness. The primary goals of hospice care are to provide comfort, relieve physical, emotional, and spiritual suffering, and to promote the dignity of terminally ill persons. Hospice care neither prolongs nor hastens the dying process.
When is it time for hospice care?
The decision to enter hospice care can be made at the time of the diagnoses of a terminal disease or later in the course of treatment. It can be difficult to accept death and even more difficult to let death come naturally. As long as your physician certifies that you have a limited life expectancy of six months or less and you and your family desire no further aggressive/curative treatment, you are eligible for hospice.
What if I don’t have a cancer diagnosis?
More than one-half of hospice patients nation-wide have diagnoses other than cancer. Hospices are also serving families coping with the end-stages of chronic diseases, like emphysema, Alzheimer's, cardiovascular, and neuromuscular diseases.
Where can I receive hospice care?
Hospice is not a physical location. Hospice care can be provided in a person’s home, nursing home, hospital, or independent facility devoted to end-of-life care.
What kind of care will I receive?
Hospice care is holistic; Hospice treats the whole person, not just the disease. It focuses on the needs of both the patient and the family. Care is provided by an interdisciplinary team including the physician, nurse, social worker, chaplain, home health aide, pharmacist, volunteers, nutritionist, and physical therapist.
Has my doctor “given up” on me by referring me to hospice?
Primary physicians often remain actively involved in the care of patients after admission to hospice. For many patients, the involvement of the primary physician in hospice care provides reassurance that their doctors are NOT “giving up” on them. Even if you are no longer being offered curative medical options there is much that can be done to improve quality of life and mange pain and symptoms.
What is the difference between hospice and palliative care?
Hospice care is a specialized form of palliative care provided during the last few months of a person’s life. People who have a life-limiting disease may receive palliative care at any point in the course of their illness for pain and other physical symptoms and to assist them in coping with how the illness impacts their daily living and family. Both hospice and palliative care share the goals of relieving suffering and improving quality of life.
Who is on my hospice team?
The hospice team interdisciplinary team provides care based on a coordinated plan of care. The patient and family are integral members of this team. Regular team meetings and frequent communications among clinical staff and with the patient’s primary physician ensure that patient and family needs and goals are met and constantly reassessed.
Will it be difficult to take care of a hospice patient at home?
Despite the challenges of providing care for a loved one who is ill, many families say that they are grateful for the opportunities for closeness that spending this time with their loved one has given them. It can be a deeply rewarding experience for everyone involved. Your hospice team will be your partners through this experience by providing you with education and support to help you learn the skills and tasks you need to care for your loved one at home. Your home health aide, as part of the hospice team, can supplement some of the care that you provide for your loved one.
Who will be on my hospice team and what can they do for me?
Even with years of experience, caregivers may find the last stages of life uniquely challenging. Simple acts of daily care are often combined with complex end of life decisions and the feelings that may arise. Your hospice interdisciplinary team is available to assist you in making these decisions and navigating through these stages. Your nurse can provide education about medications that can manage the symptoms your loved one is experiencing. Your social worker will provide counseling and support to assist you. Your spiritual needs can be addressed by your chaplain. Volunteers may also be able to provide assistance and support while your loved one is on hospice.
Will I need to buy my own equipment?
Most insurance policies, Medicare and Medicaid cover all the equipment that you need. Most often this includes a hospital bed, a commode, oxygen, a walker, a shower chair and a wheelchair. If you need something else, discuss it with your hospice team and they will help you to get what you need.
What if I just need a break?
Caregiver stress can lead to physical and emotional distress that can interfere with your ability to provide care. There may come a time during the course of your loved one’s illness that you as a caregiver need some time away from the tasks of care giving. The Hospice Respite Care Benefit is designed to provide a temporary, short-term break for caregivers caring for a Hospice patient. This benefit provides ongoing care in a facility for up to 5 days to allow family caregivers a break. For example, many patients and families use respite care to attend a family event, take a short vacation, etc.
How can I really be a long distance caregiver if my loved one is on Good Shepherd Hospice?
Caregiving is not easy for anyone, not for the caregiver and not for the hospice patient. From a distance, it may be especially hard to feel that what you are doing is enough, or that what you are doing is important. It usually is. But your hospice team is here to work with you. Your team will make visits and can call you and keep you apprised of all that you need to know about your loved one from far away. Am I still a caregiver if my loved one is on Good Shepherd Hospice in a nursing home?You may not be providing direct hands on care to your loved one, but you are still the caregiver when you are ensuring that all that your loved one’s needs are being met. Your hospice team is here to work with you and to work with the staff in the nursing home to make sure that at this difficult time, when things may be changing, that all of your loved one’s needs are being addressed.
What support is available to me as a caregiver of a patient on Good Shepherd Hospice after my loved one has died?
Good Shepherd Hospice provides comprehensive and accessible bereavement support and education to families in both Nassau and Suffolk counties. The caring and support of Good Shepherd Hospice continues after the death of a loved one. As part of our commitment to provide exceptional ongoing Hospice services, extensive bereavement support and education are offered for a period of 13 months after the death of your loved one. Bereavement services are available at no charge to you and are available to anyone in the community whether or not their loved one was on our hospice program.
It is the policy of Good Shepherd Hospice to inform all patients and families concerning Advance Directives.
Advance Directives means
- Information regarding Health Care Proxy
- Explanation of resuscitation and do not resuscitate status
- Your right to refuse treatment and an explanation of the consequences
- Informed consent for care and treatment
- Explanation and copy of the Patient/Family Bill of Rights
- The ability to ask questions regarding the risks and benefits of treatment and the provision of concise, understandable answers to your questions
- The responsibility of Good Shepherd Hospice to educate the entire community re: Advance Directives.
If a Do Not Resuscitate (DNR) Status is chosen
You will be asked to sign a form which will be mailed to your primary physician to inform him/her of your wishes.