The Mindful Caregiver – Understanding Palliative and Hospice Care and How It Can Help
PROVIDE YOUR LOVED ONE WITH THE BEST POSSIBLE CARE
BY NANCY KRISEMAN, LCSW
AJT CONTRIBUTOR
Most caregivers don’t really want to think about planning for end-of-life-care with their loved one. Yet, adding palliative care or hospice as a part of a caregiver’s circle of support can make a huge difference for both the caregiver and loved one who is ill. Let me explain and begin by saying that there is a great deal of misinformation about palliative care and hospice.
“Palliative care”refers to the medical, emotional and spiritual care designed to enhance comfort and improve the quality of life of a person during the later stages of illness. The goals of palliative care are to anticipate, prevent, and relieve suffering. Palliative care is provided by many hospice organizations and by some hospitals. It can be offered in hospitals, long-term care facilities, and in homes. If you are considering palliative care, it is important that you find out which hospice organizations and hospitals offer this type of care.
In order to get palliative care for your loved one, a physician referral is needed. This will be followed by an evaluation by a nurse to determine if your loved one meets the criteria for palliative care. If so, check to see what services are covered by insurance. Once on palliative care, your loved one will be assigned a team of professionals, which usually includes a physician, nurse, social worker, and chaplain. The care team will supervise your loved one’s medical care, as well as offer emotional and spiritual support to you and your loved one. Your loved one will receive whatever is needed to control pain, nausea, and any other uncomfortable symptoms.
As your loved one’s illness becomes more progressive, it may be important to ask if he or she would benefit from hospice care. The difference is that with palliative care a person still receives treatment for his or her disease. The goal of hospice care is to solely manage a person’s symptoms and make the person as comfortable as possible. Curative care is no longer offered, and the focus is solely on comfort, support, and pain control.
To qualify for hospice care, a physician has to determine that a person is in the end stage of his or her disease, has no hope of a cure, and probably has six months or less to live. Like palliative care, a referral from a physician and an evaluation will be needed for hospice care and there is an interdisciplinary team of professionals, often including an on call nurse to address any concerns. Hospice can be provided in a home, in a long term care facility, or in some circumstances, at an inpatient hospice facility. Additionally, the care team will manage your loved one’s care, and unlike other forms of care, not send him or her to the hospital should there be a crisis. Instead, your loved one will be made as comfortable as possible on continuous care, and live their remaining days in comfort with no heroic interventions, procedures, or surgeries. If the hospice you have employed has an inpatient facility, then you may be offered to admit your loved one to their inpatient facility.
Over the years, I have found some caregivers resist considering palliative or hospice care. The common reasons I have heard include: not wanting to give up hope, not wanting their loved one to feel as they are giving up, or just being in denial. Be aware that these biases exist even among some health professionals, and they may not bring up the topic.
Learn what palliative care or hospice can offer. Try not to see it as giving up, but providing care, support, and comfort to you and your loved one. Also keep in mind that not everyone who is referred to hospice dies within six months. I have had clients seek hospice care for their loved ones, some of whom have lived for several years. And others have been discharged from hospice care because they were doing so well.
One note of caution, do your homework. Find out your options before your loved one needs hospice care. Hospice care in particular is a rapidly growing industry and is now widely available. The downside of this growth is that caring for the dying has become big business. Find out what the different hospice services offer and how they work. The bottom line for caregivers is that choosing a quality hospice for your loved one is not a death sentence, it is something that can help him or her, and you, end well.
Nancy Kriseman is the author of The Mindful Caregiver: Finding Ease in the Caregiving Journey and a licensed clinical social worker who specializes in working with older people and their families. This column is about helping families make the best decisions possible and be proactive when supporting and caring for elder family members. To contact Nancy, you can visit her website at www.nancykriseman.com, follow her on twitter @GeriatricMSW or visit her Facebook pages.
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