In March, I took a trip to Washington, D.C. with close to 1300 other people. The purpose of our trip was to take part in the Alzheimer’s Advocacy Forum, which is an event where participants are educated about important legislative issues related to Alzheimer’s, and then spend time talking with their representatives in Congress about those issues.
This year, one of the issues that was central at the Advocacy Forum was the need to increase awareness of certain services that can make a critical difference in the quality of a person’s life when living with Alzheimer’s or other illness. These services are called “palliative care” and “hospice care.” The focus of palliative and hospice care is to provide services and support that improve the quality of life and that reduce pain and discomfort for a patient with serious illness. The need for education about palliative and hospice care is the focus of legislation that was introduced by Wisconsin Senator Tammy Baldwin and Senator Shelley Moore Capito (R-WV) in the Senate, and Representative Eliot Engel (D-NY- 16) and Representative Tom Reed (R-NY- 23) in the U.S. House of Representatives. The bill is S.693/H.R.1676. Its full name is the Palliative Care and Hospice Education and Training Act. PCHETA for short.
Hospice care is for a patient with a terminal illness who is nearing the end of life. It includes services such as counseling for the patient and family, spiritual support if desired, pain medications, medical equipment such as a hospital bed and oxygen, nursing support and home health aides, and the development and implementation of a plan of care. The hospice agency will also provide grief support to the family after the patient’s life has ended. Many hospice patients prefer to receive these services in their home, and a hospice agency will come into the home to meet with the patient and family / caregivers, and to deliver services. Hospice care can also take place in a residential facility or an inpatient hospice facility.
Both of my parents received care through hospice. For my father, he received hospice care when his cancer was terminal and he made the choice to stop curative treatment. My father benefited from the support, services, pain management, management of his symptoms and the care that was provided to him in my home, where he and my mother lived. He was much more comfortable, and as a family providing care to him, we had support from professionals. My mother received hospice care two times in her life when she was in the later stages of Alzheimer’s. Both times, she had lost a large amount of weight due to not eating. Hospice caregivers provided one-one-one attention in the assisted living facility where she lived, and she improved to the point where she no longer needed hospice services. (I have some concerns about the criteria for hospice for patients with Alzheimer’s that should be the subject of a separate post. I think it is too difficult for patients to be considered at the end of life so as to qualify for hospice with Alzheimer’s, and hospice services should actually start sooner.) But once Mom qualified, the services improved her health overall and gave her a higher level of support than she would have received without hospice.
Over half the patients with Alzheimer’s are in hospice at the end of their lives. But hospice care is not just for people with Alzheimer’s, it is available for any type of terminal illness. Hospice care can be fully covered by Medicare if the patient has Medicare and elects to participate. Electing hospice means the patient gives up the ability to obtain treatments to cure the disease, such as surgery and radiation. Once the patient makes this election, the kinds of hospice services that are covered are very broad. However, the patient can always change his or her mind and go back into the regular Medicare program.
Palliative care is a kind of care that has a goal of managing pain and other symptoms and improving the patient’s safety, comfort and quality of life. It is not limited to end of life treatment. A person can request palliative care at any stage of a disease or illness. Whether or not it is covered by Medicare or other insurance will depend on the kinds of services being provided, but many palliative care services are covered.
Palliative and hospice care can reduce the chances that a patient with a serious illness would need an acute hospitalization, because the patient’s symptoms and pain are steadily managed. But not enough people know about hospice, and even fewer know what palliative care is. There is a need to increase the use of these programs, and it starts with education. Patients won’t use the services if they don’t know about them, and patients won’t know about them if their health care providers are unaware.
PCHETA would change that.
PCHETA establishes palliative care training programs for health professionals. By doing this, the chances that palliative and hospice care will be recommended by providers and used by patients will increase. More providers will know how to deliver services to a growing population who will need them.
PCHETA also would launch a national palliative care education and awareness campaign. This would inform families about the benefits of palliative care and how to access the services.
PCHETA would also enhance research in palliative care to determine how to use the services to improve the quality of patients’ lives.
The Alzheimer’s Association has additional information about PCHETA and why we need this legislation. You can watch the short video below or click here.
Please call your senator and representative to ask for their support of the PCHETA bill (or call Senator Baldwin to thank her!) Hopefully by the time we return to Washington DC next spring for the 2018 #Alzforum, we will have a law to celebrate.
Meanwhile, if you or a loved one are facing a serious illness – ask your health care providers about the availability of palliative care, where a team of professionals can help you develop and implement a plan to maximize your quality of life. If you or a loved one have a terminal condition, please educate yourself about hospice care so that when the time comes, you can benefit from this service. The National Hospice and Palliative Care Organization has a website where you can learn more. http://www.caringinfo.org