The Centers for Medicare & Medicaid Services (CMS) has created the hospice coverage program to support patients who have a terminal illness and their families through the dying process and 13 months afterwards. The guarantee supports patients receiving care from a certified hospice agency, collaboration from two providers to certify the patient’s prognosis, and the patient election of services. While the hope is for all patients to experience the comfort and care that is provided through hospice, patients and families always have a choice.
A common misconception is that hospice is only for palliative services, i.e., pain management via morphine. This is an oversimplification of the skilled services the hospice team provides and limits the level of intervention that is actually provided. Services that can support quality of life include the medical oversight from the agency provider, the skilled nursing care, the medical equipment and supplies provided, the medications that address pain and other symptoms, the care services of the certified aide, the counseling services of the social worker, the spiritual guidance of the chaplain, and the consultative training and support of physical, occupational, speech, and dietary therapies. Finally, the ongoing service provision after the patient has died cannot be discounted.
Facilities and providers that claim “hospice-like” services will often charge for the medical consultation, charge for the medications provided, and often do not address the psycho-social-emotional-spiritual aspects of the dying process. Patients on hospice are supported with a comprehensive plan that addresses how they would like to pass away, their funeral arrangements, their household arrangements, and the collaboration with their family members for key decisions beyond their healthcare. This is included in the hospice benefit. The Medicare benefit covers all of these services.
Patients are entitled to hospice. They have paid their whole life for the service, and they deserve the full benefit.
Questions you may want to explore with a potential hospice company are:
1)How will the hospice team manage my pain or other symptoms that arise? Your nurse and medical provider will review your symptoms and implement different interventions, including medications, therapies (e.g., massage), or strategies.
2) Can I take my current medications? Some patients choose to continue existing medications. All medications are discussed with your hospice team to identify side effects and symptoms that may alleviate or contribute to your comfort.
3) What if my symptoms become uncontrollable at home? Can I go to the hospital? Hospice involves different levels of care. While our goal is to manage all of your symptoms in the comfort of your home, if we are unable to do this, we will increase your care potentially involving an inpatient stay.
4)How will the hospice team keep me and my family informed about my condition? You will have ongoing communication with your hospice team, primarily through your nurse case manager.
5) Will my family and I be involved in making care decisions? Yours and your family’s concerns for care are integral in the team dynamic. Your concerns and questions are critical to developing a care decision that meets the need.
6)How do I communicate any questions or concerns I have about my care? You have access to all of your care team members. These individuals are available to you to support issues or concerns that arise.
7)Can I still see my regular doctor if I am on hospice? If you choose the agency’s medical director, your care will be deferred to the new provider in collaboration with you and the care team. You may elect to use your primary care provider to oversee your hospice benefit if you prefer to retain your provider.
8)How will the hospice team prepare me and my family for what to expect? Your team involves trained professionals who recognize signs and phases of the dying process. Part of hospice is to provide education and support as things change. This is why you will have regular visits with the nurse who will assess and provide education and training. This visit with your nurse may introduce, or exit, members of your care team based on your individual needs.
9)Can we speak with other caregivers to learn of their experience with hospice? We can connect you with individuals who have gone through the hospice process. Many times, these individuals are volunteers with our agency who want to give the support they received back to individuals who are now going through the process.
10) What support services are offered by the hospice? One of the levels of hospice involves respite care. There are also coordinated services for caregivers to provide regular opportunities to refresh. Your case manager will work with you and the social worker to identify and coordinate the appropriate supports.
11) What if we cannot take care of our loved one at home? Your social worker is a critical member at addressing your psycho-social-emotional needs. If you find that you are unable to care for your loved one at home, your social worker will work with you to identify options for placement, increased hired help, or other supports.
12) How will the hospice team support us emotionally through the grieving process? Bereavement is offered for up to 13 months. By design, your hospice benefit is meant to support your loved ones after you pass away through important dates, such as birthdays, anniversaries, and your death. These services are part of hospice and help family members after you have transitioned.
These questions are some of the more common questions we address regularly. You may have others, and those should be talked about before you start hospice. It is a big decision, and for many family members, a decision that helps shape how someone passes.