How to find a hospice provider
Thinking about the end of life can be upsetting and emotionally overwhelming. However, preparing for and making choices about end-of-life care, while extremely difficult, can offer patients and families a sense of relief and control. Such planning can be reassuring for everyone involved. Knowing what lies ahead can help reduce fears of the unknown.
Most communities have more than one hospice organization. Ask the patient’s healthcare team or a social worker to help you find out what hospice care is available in your community and how to arrange for it.
The National Hospice and Palliative Care Organization (NHPCO) has a state-by-state directory of hospice providers on its website, www.nhpco.org. You may also receive assistance by calling the NHPCO “HelpLine” toll-free at 800-658-8898. In addition, the Pancreatic Cancer Action Network’s Patient and Liaison Services (PALS) Associates can provide you with resources to find hospice care in your area. PALS Associates are available toll-free at 877-272-6226 or by email at firstname.lastname@example.org M-F 7am-5pm Pacific Time.
Who provides hospice services?
Hospice care is a team effort. A team of trained healthcare professionals, including hospice physicians, hospice registered nurses, home health aides, social workers, chaplains and grief counselors, work with caregivers to care for the patient and guide families throughout the hospice journey. Each person performs a unique set of duties aimed at improving quality of life for the pancreatic cancer patient.
If home hospice care is provided, the key person on the hospice team is the primary caregiver. The primary caregiver may be a spouse, partner, parent, child, sibling, relative, friend or privately hired person. Most likely this is the person who has been with the patient throughout the cancer journey, someone trusted and with whom the patient feels completely comfortable. Caregivers do many things including: giving medication, continually monitoring changes in the patient’s condition, preparing meals and helping with all aspects of personal care. The primary caregiver works closely with the hospice staff to keep the patient as comfortable as possible.
Serving as a caregiver can be extremely rewarding. Many partners, family members or friends who have helped with caregiving find it very satisfying and would not have chosen any other option. However, caregiving is also a considerable responsibility that is both physically and emotionally demanding. Talk with your loved one and make sure you are both prepared for the challenges ahead. Hospice may not work for all families or situations.
If a pancreatic cancer patient does not have a primary caregiver, the hospice team will assist the individual in finding available community resources and support.
Affording Hospice Care
Most health insurance companies have a hospice benefit that pays for all or most of the costs associated with hospice care. This means that families usually pay very little and often nothing for end-of-life care. Contact the patient’s health insurance provider for specifics on coverage.
Hospice benefits generally pay for:
- doctor services
- nursing care
- medical equipment (such as wheelchairs and walkers)
- medical supplies (such as bandages and syringes)
- medications for symptom control and pain relief
- short-term care in the hospital, including respite and inpatient care for pain and symptom management
- in-home crisis care (as determined by hospice staff) for short-term 24-hour nursing care at home to manage difficult symptoms
- home health aide and housekeeping services
- physical and occupational therapy
- speech therapy
- social work services
- dietary counseling
- grief support
Some insurers that provide a hospice benefit include:
- Medicare — The Medicare Hospice Benefit
- Medicaid (in most states) – The Medicaid Hospice Benefit
- TRICARE (military health system)
- Most private insurance companies
If the pancreatic cancer patient does not have or qualify for any form of health insurance, some hospices can still provide care at little or no cost. Talk with several hospice organizations to learn what is available.
Some costs are not covered by health insurance when hospice care is given in a retirement home or nursing facility. In this situation, the cancer patient is responsible for paying for rent, meals, and some routine care services that are provided by nurses and health aide workers who are employed by the retirement or nursing facility.Benefits vary among insurance plans. Be sure to check with the patient’s insurance and hospice provider to ensure that the needs of the patient will be met.
Hospice can help with practical care, covering everything from insurance and other financial matters to light housekeeping and routine chores.
The people who provide these practical services are housekeepers, social workers and volunteers.
The hospice social worker can also help with many practical concerns including:
- explaining and helping to complete advance directives (see below), if requested
- identifying and explaining insurance benefits
- explaining what services hospice benefits pay for
- setting up a system for staying organized
- linking the patient, caregivers and family to community resources
- arranging for respite care that gives caregivers time off
- contacting friends and relatives
- assisting with funeral arrangements
Most hospice organizations have trained volunteers to help patients and their families. Volunteers may be available to:
- help with household chores and responsibilities
- run errands
- help with child care
- perform light housekeeping duties
- stay with the patient while the caregiver takes time to rest
What are advance directives and why are they important?
Advance directives give patients the control and legal ability to state exactly how they want to be cared for and who they want to make decisions for them if they become unable to communicate their wishes. When patients are no longer able to discuss medical options with their healthcare teams or their families, advance directives make their wishes known. Advance directives may specify the types of medical support that a patient does and does not want, including the use of feeding tubes, breathing machines and cardiopulmonary resuscitation (CPR).
Advance directives include documents such as a “Directive to Family and Physicians” (more commonly known as a “living will”), a “Durable Medical Power of Attorney,” and a “Do Not Resuscitate” (DNR) order.
A “Directive to Family and Physicians” document outlines the patient’s wishes regarding medical treatments they do and do not wish to receive. This includes mechanical breathing aids (respirators or ventilators), tube feeding and cardiopulmonary resuscitation (CPR). Doctors and loved ones can help patients make and document these important decisions.
It is also advisable for pancreatic cancer patients to obtain a “Durable Medical Power of Attorney.” This document allows the patient to designate a trusted person as his/her healthcare agent or proxy. A healthcare agent/proxy is able to make medical decisions for the patient if he or she is incapacitated and therefore unable to make decisions. When choosing a healthcare agent, it is important to have an open discussion with that person to make sure they understand the patient’s thoughts and opinions regarding his/her illness. The healthcare agent should know how the patient wishes to live the remainder of his/her life. A medical power of attorney is different from a legal power of attorney. A legal power of attorney grants an individual the authority to make financial and other decisions on behalf of the patient.
A “Do Not Resuscitate” (DNR) order is an advance directive that states that no life-saving medical procedures, including CPR, are to be used if the heart or breathing stops. The use of CPR on patients with advanced pancreatic cancer may reduce quality of life and prolong the dying process. Hospice staff and the patient’s physician can arrange a discussion of the benefits and risks of CPR and a DNR order so that an informed decision can be made.
These documents can be prepared at the patient’s request and must be signed by the patient before they are given to physicians. The patient decides what provisions will be included in each document. However, if the patient is incapacitated and not able to clearly communicate his or her wishes when hospice care is needed, then certain family members can prepare these documents on the patient’s behalf.
Hospice professionals support the patient’s right to make their own decisions. Patients are not required to have a DNR order to receive hospice services. If a patient wants to have a DNR order, hospice staff can help make the necessary arrangements.
If advance directives have not been completed at the time of hospice admission and the patient would like to complete them, the staff can help to arrange for and finalize these documents. Each option will be clearly explained so that the patient can make informed decisions. Advance directives and DNR orders can be changed by the patient at any time. In all cases, creation or modification of advance directives must be initiated by the patient, not by the hospice or healthcare teams.
In addition to the hospice team, legal advisors can help finalize details of the patient’s advance directives.
Information provided by the Pancreatic Cancer Action Network, Inc. (“PanCAN”) is not a substitute for medical advice, diagnosis, treatment or other health care services. PanCAN may provide information to you about physicians, products, services, clinical trials or treatments related to pancreatic cancer, but PanCAN does not recommend nor endorse any particular health care resource. In addition, please note that any personal information you provide to PanCAN’s associates during telephone and/or email communications may be stored and used to help PanCAN achieve its mission of assisting patients with, and finding cures and treatments for, pancreatic cancer. Stored constituent information may be used to inform PanCAN programs and activities. Information also may be provided in aggregate or limited formats to third parties to guide future pancreatic cancer research and treatment efforts. PanCAN will not provide personal directly identifying information (such as your name or contact information) to such third parties without your prior written consent unless required or permitted by law to do so.