Departure doulas cannot provide medical help to clients. In fact, we cannot even give medications, including over the counter, to clients. For this reason, it is important that clients and families have access to medical care and medications for symptom and pain management at end of life. Hospice provides this care. This medical care has become more well-known during the the 45 year history of hospice in the U.S., but there are still many myths among the public about what hospice does. Have you heard or thought these things yourself? I’ll be back to share more information about what hospice care is and what it looks like in the coming weeks.
Hospice is giving up. To the contrary, hospice enables us to live more comfortably and fully and with the highest possible quality for the time remaining to us.
Hospice is only for cancer patients. Hospice services offer care and assistance to patients with many different diagnoses such as COPD, dementia and Alzheimer’s, renal failure, MS and ALS.
Hospice is where you go to die. Hospice is not a building. It is an interdisciplinary team that provides comfort and care at home or any other place where a patient is living.
Hospice means I’m going to die within a few days or weeks. Hospice care begins when patient decides not to pursue life-sustaining treatment and has a prognosis of living for six months or less without continuing curative treatment. As a hospice volunteer, the majority of patients with whom I have had interaction have lived this long and often longer, even “graduating” from care.
You can’t keep your own doctor if you enter a hospice program. The hospice team will make a plan for treatment and care for the patient. Ideally, the patient’s physician’s participation makes that plan more personalized and effective.
It is the doctor’s responsibility to bring up hospice. Anyone can request hospice care and can inquire about, interview and research any hospice as they choose. Agencies will evaluate patients and can request a doctor’s order, if necessary.
Once you choose hospice care there is no turning back. Patients can “graduate” and leave hospice care if their condition improves, or they can choose to leave hospice care at any time for any reason. Perhaps the patient decides they want to pursue another round of radiation or dialysis. The patient can also return later at any time if circumstances change again.
If you choose hospice care you won’t get other medical care. Hospice teams will make a treatment plan for the condition for which the patient was referred, but other care can be obtained for other conditions. For example, hospice will provide all the treatment related to the patient’s heart disease, but not for a broken leg, chipped tooth or cataract.
Hospice requires a DNR (Do Not Resuscitate) Order. Although many patients and families that choose hospice care do so, so that patients can remain in a place that is calm and familiar with family access, and to avoid hospitalization and emergency medical interventions.
All hospices are the same. You should absolutely research area hospices. Although all hospices are required to provide the same basic services as required by Medicare, there are many areas where they may differ: for-profit versus non-profit or independently- operated versus part of a larger regional or national agency. Also whether or not they have enough staff to cover evening or weekend emergencies can affect how the services are provided.
Disabled people can’t receive hospice care. Hospice care can be provided even if a person is living in an assisted or group-home.
Hospice is only for old people. According to the American Hospice Foundation, about 20% of patients in hospice care are under the age of 65.
Hospice is only for dying people. Hospice services are provided to the patient’s caregivers, family and friends through social services support, volunteers, grief and bereavement work and care. Many hospices also support community initiatives and programs addressing grief and care for caregivers.
Hospice can only help when family members are available to provide care. Many people who are dying live alone or are not able to live in their home at this time. Hospice works to find community resources to provide care for patients living alone or can help move patients to care facilities where they receive around the care assistance with the activities of daily living.
Hospice is for people who don’t need a high level of care. Hospice is medical care paid for by Medicare. Hospice is required to offer high level care for symptom and pain management and has the highly-skilled nurses, physicians and staff to do so.
Hospice is only for people who can accept death. Hospice provides chaplains and social workers that can help guide and facilitate family discussions or conduct one-on-one conversations with the patient who is dealing with an unexpected terminal illness.
Hospice care is expensive. Hospice care is covered by Medicare and actually is much less expensive than extended hospital and specialty care at end of life.
Hospice is not covered by managed care. Most managed care insurance offers some benefits for hospice care, again, because it is more affordable for insurers than hospitalization would be.
Hospice care ends with the passing of the patient. Bereavement and grief support is an important part of hospice care and is available for at least a year at most agencies.
Hospice has a religious affiliation. Hospice considers meeting spiritual needs at the end of life as an integral part of the care for the patient and the patient’s family. Non-affiliated chaplains provide this service and respect the culture and beliefs of the family being served.
Hospice means you or the system failed the patient. Electing hospice care means that the focus of care shifts from curative care to comfort, ease and quality of life. Curative treatments are not always the best option nor always offer the perfect solution for all stages of a person’s life. Choosing a different option is not an indication of failure or retreat.
Hospice makes death come sooner. Hospice neither hastens nor postpones death. It is care that addresses comfort and quality of life physically, emotionally, and spiritually. Also, while studies have shown that some patients live longer after receiving hospice care, no studies have shown that patients die sooner while on it.
Morphine prescribed to a hospice patient causes premature death. Morphine helps control pain and other symptoms and hospice physicians and nurses have extensive training to know how often and how much to administer to control these symptoms while maintaining quality of life. The use of morphine may often increase along with the increase of symptoms brought about by disease progression, but the disease progression is what determines when a patient will die, not the use of morphine.