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Hospice & Palliative FAQ
There are some misconceptions regarding Hospice & Palliative Care so below we have included some frequently asked questions.
Now is the best time to learn more about hospice and ask questions about what to expect from hospice services. Although end-of-life care may be difficult to discuss, it is best for family members to share their wishes long before it becomes a concern. This can greatly reduce stress when the time for hospice is needed. By having these discussions in advance, patients are not forced into uncomfortable situations. Instead, patients can make an educated decision that includes the advice and input of family members and loved ones.
Hospice care is for those who are experiencing an illness that can not be cured and leaves them with six to twelve months to live. Hospice is centered around palliative care, managing the symptoms of the disease itself or the medicine taken for it, and not around treating the disease itself. Many people turn to hospice care to not only help to provide them with symptom management but also to help them with their emotional or spiritual distress as they go through the final stage of life.
One common misconception is that hospice starts right before death. Doctors, patients, or family members may resist hospice because he or she thinks it means you're "giving up," or that there is no hope. This is not true. If you get better or the cancer goes into remission, you can be taken out of the hospice program and go into active cancer treatment. You can return to hospice care later, if needed. The goal for hospice is to improve your quality of life making the best of each day during the last stages of advanced illness.
You do not need to wait for the doctor to suggest hospice care for your unwell loved one. You know your family best and if you believe they are likely to only be with us for six to twelve more months, and their doctor agrees, then please do not hesitate to reach out to us. We have found that some doctors will wait for the family to bring up the idea, so please do not feel like you should wait for their suggestion. If you feel that your loved one could benefit from pain management, spiritual and emotional help, and everyday personal care from trained professionals, we would love to help.
Typically, hospice care starts as soon as a formal request or a ‘referral’ is made by the patient’s doctor. However, a referral is not required if you are only wanting a hospice presentation or educational visit from a hospice representative. If your doctor sends a referral to hospice, a program representative will make an effort to visit within 24 hours of that referral, providing the visit meets the needs and schedule of the patient and family/primary caregiver. Usually, hospice care is ready to begin within a day or two of the referral. However, in urgent situations, hospice services may begin sooner.
Hospice does not only care for cancer patients. Hospice is for any individual who is suffering from an illness that can not be treated and they would like to live out their remaining time comfortably.
Patients who found our services helpful often suffer from conditions such as heart disease, COPD (emphysema) and advanced dementia. Patients who can no longer take care of their day to day tasks or their personal grooming needs.
Every hospice patient has access to a hospice volunteer, registered nurse, social worker, home health aide, and chaplain (also known as the interdisciplinary team). For each patient and family, the interdisciplinary team writes a care plan with the patient/family that is used to make sure the patient and family receive the care they need from the team. Typically, full-time registered nurses provide care to about a dozen different families. Social workers usually work with about twice the number of patients/families as nurses. If needed, home health aides, who provide personal care to the patient, will visit most frequently.
All visits, however, are based on the patient and family needs as described in the care plan and the condition of the patient during the course of illness. The frequency of volunteers and spiritual care is often dependent upon the family request and the availability of these services. Travel requirements and other factors may cause some variation in how many patients each hospice staff serves.
Many patients may have pain and other serious symptoms as illness progresses. Hospice staff receives special training to care for all types of physical and emotional symptoms that cause pain, discomfort and distress. Because keeping the patient comfortable and pain-free is an important part of hospice care, many hospice programs have developed ways to measure how comfortable the patient is during the course of their stay in hospice. Hospice staff works with the patient’s physician to make sure that medication, therapies, and procedures are designed to achieve the goals outlined in the patient’s care plan. The care plan is reviewed frequently to make sure any changes and new goals are in the plan.
Hospice services can be provided to a terminally ill person wherever they live. This means a patient living in a nursing facility or long-term care facility can receive specialized visits from hospice nurses, home health aides, chaplains, social workers, and volunteers, in addition to other care and services provided by the nursing facility. The hospice and the nursing home will have a written agreement in place in order for the hospice to serve residents of the facility.
A growing number of hospice programs have their own hospice facilities or have arrangements with freestanding hospice houses, hospitals or inpatient residential centers to care for patients who cannot stay where they usually live. These patients may require a different place to live during this phase of their life when they need extra care. However, care in these settings is not covered under the Medicare or Medicaid Hospice Benefit. It is best to find out, well before hospice may be needed, if insurance or any other payer covers this type of care or if patients/families will be responsible for payment.
Palliative care may be right for you if you have a serious illness. Serious illnesses include but are not limited to: cancer, heart disease, lung disease, kidney disease, Alzheimer’s, amyotrophic lateral sclerosis (ALS) and many more. Palliative care is appropriate at any stage of a serious illness. You can also have this type of care at the same time as treatment meant to cure you.
Palliative care (pronounced pal-lee-uh-tiv) is specialized medical care that focuses on providing relief from the symptoms and stress of a serious illness. It is provided by a specially-trained team of doctors, nurses and other specialists who work together with your other doctors to provide an extra layer of support. The goal is to improve your quality of life.
To do this, the palliative care team will:
• Relieve your symptoms and distress
• Help you better understand your disease and diagnosis
• Help clarify your treatment goals and options
• Understand and support your ability to cope with your illness
• Assist you with making medical decision
• Coordinate with your other doctors
In short, you can expect that your quality of life will be improved. You will have relief from symptoms such as pain, shortness of breath, fatigue, constipation, nausea, loss of appetite and difficulty sleeping. You can also expect close communication and more control over your care.
Palliative care will help you carry on with daily life. It will improve your ability to go through medical treatments. And it will help you to match your goals to your treatment choices.
The palliative care team will also spend time talking and listening to you and your family. They will make sure you completely understand all of your treatment options and choices. By deeply exploring your personal goals, the palliative care team will help you match those goals to the options. They will also make sure that all of your doctors are coordinated and know and understand what you want. This gives you more control over your care.
