Last month, I wrote a little bit about my family’s experience with end-of-life planning and opting for hospice care. Since then, I realized my story might have raised more questions than answers. So, this month, I will provide additional details and perspective to these questions and others I have received when speaking with folks in our community.
As healthcare professionals, we sometimes forget that the terminology and language we use every day are not commonly known to our friends and family. To that end, I’d like to share the basic definitions of palliative care and hospice care and then address a few common questions about the two.
Palliative care is specialized medical care for people with serious illnesses. It focuses on providing patients with relief from the symptoms and stress of a serious illness. The goal is to improve quality of life for both the patient and the family. Many palliative care programs coordinate providers and disciplines with doctors, social workers, chaplains and home health staff members. Palliative care can be provided at the initial diagnosis or at any point in time during the course of treatment for a serious illness. However, while the patient can continue to seek and receive curative treatment such as surgery, chemotherapy and general radiation while receiving palliative care, there can be many limitations to the scope of this type of care. For example, individual services, medication and equipment such as a hospital bed or a wheelchair are all billed separately. The patient and family may continue to receive numerous individual billing statements and must continue to make visits to clinics as well as arrange for their own equipment and medication needs. Many of these services are not covered by Medicare, may require co-pays or may not be covered at all. Furthermore, spiritual care, which many families consider essential during a serious illness, is largely up to the patient and family to pursue independently. As a result, spiritual needs may take a back seat to the day-to-day management of medical appointments and transportation to and from the patient’s care team.
Hospice care is focused on providing physical, emotional and spiritual support as well as improved quality of life for the patient, family and caregivers. Here in Grant, Adams and Lincoln counties, Assured Hospice provides hospice care for a patient when his or her doctor believes that the patient’s life would be limited to six months if the illness follows its natural course. Many people have improved quality of life and live more comfortably with hospice care and support. It is important to note that hospice neither hastens nor postpones the natural dying process. Instead, the hospice team focuses detailed attention to the dying process as it affects the patient and family.
Hospice care is an elected benefit for which the patient signs an informed consent during the admission process. This form states that he or she knows and understands the limitation of life by the illness and will not be seeking curative measures such as surgery or chemotherapy while on hospice. This also means the doctor who has offered hospice as an option has discussed the diagnosis with the patient. However, a patient can discontinue hospice services whenever they like by signing a simple form –also an informed consent –and involves a process much like a hospital discharge.
This brings me to some commonly asked questions.
Where is Assured Hospice’s facility? Assured Hospice is not a facility where a person can reside during hospice end-of-life care. The primary location for our hospice care services is the home setting. For many patients, the familiarity of home offers a great sense of security and comfort. Hospice care can be given anywhere a patient lives, including nursing homes and assisted-care facilities.
Isn’t hospice just for cancer? No, within the last decade, Medicare has expanded the benefit to include other illnesses that progress to a point where treatment is not effective or is damaging to the patient’s quality of life. These include illnesses related to heart disease, strokes, failing kidneys and liver as well as HIV and AIDS. Neurologic disorders such as end-stage Parkinson’s disease, Lou Gehrig’s disease, Alzheimer’s Disease and other forms of dementia are also included.
Why would a patient and family choose hospice care? One example of a differentiating hospice benefit is that of follow-up bereavement care for the family and loved ones after the terminally ill person has passed away. This support is maintained through phone calls, mailings, support groups and personal interaction for 13 months. There are no charges for this care, and many families find it to be an invaluable resource to help support to maneuver through the first year – first anniversaries, first Christmas, first birthday, first Valentine’s Day, just to name a few. In my own experience, I found those days to be difficult and isolating. Having a support group to look forward to, where others are experiencing life moving forward, and being able to help those same people can make life after loss more pleasant.
My wise mentor says, “All hospice care is palliative, but not all palliative care is hospice care.” For more information about Assured Hospice of Moses Lake, please call 509.766.2580.
Written By Dorothy Heikell, Patient Care Representative for Assured Hospice of Moses Lake