Hospice Patients Alliance: Consumer Advocacy


Informed Consent

Knowing your rights as a hospice patient is essential if any difficulties arise in the care being provided to you. Being fully informed before any health care is provided is called "informed consent." You cannot reasonable make any decision about the type of care you desire if you don't know what is available and what all your options are. For this reason, informed consent is mandatory in all health care settings, including hospice.1

Making sure all patients receive informed consent is so important that the Federal government makes "informed consent" a "Condition of Participation" in the Medicare program. You can see the law on hospice at the Code of Federal Regulations 42 CFR ch. iv. part 418. All hospices must have you sign an informed consent form before admitting you to the program. Hospices that do not provide informed consent could be excluded from receiving any reimbursements through Medicare. Medicaid and private insurance companies also require that complete informed consent be provided to the patient.

Types of Services and Levels of Care

The idea behind an informed consent form is that you learn about all the services which may be available to you. Briefly, the types of services you are entitled to are: visits from RN's, LPN's, Home Health Aides, Home Service Aides, Medical Social Workers, Chaplains, Counselors, Dietitians, Therapists; hospice Medical Director oversight of your care, and all the medicines, equipment, treatments, and supplies needed to manage the symptoms of your terminal illness and help you to be comfortable. The four Levels of Care you are entitled to are:

  1. General Home Care,

  2. Respite Care, and if you have symptoms which cause a crisis,

  3. Continuous Nursing Care in your own home or

  4. Inpatient Care in a hospice facility.

One thing you need to be aware of about enrolling in a hospice program is that you can always change your mind and withdraw from a hospice program. For example, if you were to suddenly become aware of a new treatment which your physician might use to actually treat and cure the terminal illness, you could return to the "curative" mode of medical care and be treated, just as you were before entering the hospice program. For Medicare recipients, it means that you let go of the hospice benefit and resume regular Medicare coverage.

Your Plan of Care Must Be Adequate to Meet Your Needs

The types of services and levels of care your receive depends upon your condition and changing needs. The most important requirement is that the hospice must meet your needs for care related to the terminal illness...plain and simple.2 And the laws governing hospice mandate that you, the patient, make the decision about what type of care you will accept. You have the right to choose to stay at your own home till the very end or to enter a facility. The hospice Interdisciplinary Team will assess your needs from all angles and come up with a Plan of Care which your attending physician approves. You have the right to refuse care you don't want or to accept the care you do want.

Making the Decision to Express Your Wishes

While most of us have thought about the type of care we would not want under certain circumstances, it is highly likely that we have not expressed our wishes to our entire family. We may have told our wives or husbands, but have we told our parents or children, for example? Have we told our brothers or sisters? The answers to these questions depend upon the exact type of relationships we have built within our family unit. Speaking about our own death is perhaps one of the most difficult things we could do. We may be afraid of upsetting our family by discussing it. The family may be afraid of discussing it in front of you. But if you don't take charge and discuss it now, it may never be discussed! The implications can be disastrous for you and your family.

You may assume that someone in your family may be fully aware of your personal attitude in regard to specific forms of health care interventions and treatments. However, others may be entirely unaware or uncaring about your wishes. You may or may not be surprised to learn that it is possible for family members to argue vehemently about the type of care you will be given. Love, anger, guilt and religious beliefs all come into play influencing each member to speak their mind, in agreement or disagreement.

One of the most terrible forms of suffering your loved ones may experience could be watching you endure a treatment or intervention that they know you never wanted and would object to strongly, were you able to voice your opinion. You never know when your body will weaken to the point where you will not be able to speak or communicate your wishes. For your sake and your family's welfare, decide to speak openly about your wishes and put it down on paper formally. The hospice social worker is fully qualified to assist you in making these arrangements.

Advanced Directives and DNR Forms

It is important to make a legally binding written statement about what your wishes are: about the type of care you do or don't want, what types of interventions you would accept in different situations, what types of efforts should or should not be made to save you in the event your heart or lungs stopped functioning. You can accomplish this by filling out:

  • a Medical Durable Power of Attorney Form (which clarifies in advance what your directives or wishes are...an "Advanced Directive"

  • and a DNR form (which should specify whether or not you wish to be resuscitated in the event your heart or breathing stop.

Without a DNR form, you might end up being resuscitated through CPR and acute hospital care. Without a DNR form, you may suffer more while medical personnel try to get your heart and lungs going again.

When a Medical Durable Power of Attorney form is filled out, your authorized Representative will be authorized to make decisions for you only when and if you yourself cannot make the decision due to mental or physical incapacity. Being "authorized" means that the physicians and hospice staff are legally bound to follow the decisions of the representative you choose. It also protects you from having decisions made by others who don't know your wishes or don't care about your wishes and who might try to impose their "philosophy" and "beliefs" on you against your will.

The Medical Durable Power of Attorney only becomes effective when and if you are in a coma and cannot be awakened, or if you are no longer mentally able to understand and make decisions about your care (it does happen in some cases). If you have any questions about these forms, which are all legal documents, you should speak with the hospice medical social worker, your physician and an attorney. (See the section on "Do Not Resuscitate Orders, Power of Attorney Forms, Advanced Directives and Patient Comfort").

1 The Code of Federal Regulations states (at 42 CFR 418.62) that, "A hospice must demonstrate respect for an individual's rights by ensuring that an informed consent form that specifies the type of care and services that may be provided as hospice care during the course of the illness has been obtained for every individual, either from the individual or representative [who is authorized under State law to make decisions for a patient who is physically or mentally incapacitated]...."
The Informed Consent Form is one of the documents that you must sign in order to be admitted to a hospice program. Please make sure that the hospice representative explains ALL services you may be entitled to and which they provide...BEFORE YOU SIGN ON THE DOTTED LINE. Getting your signature on the form is the hospice's legal proof to the government that it has actually provided "informed consent" to you. Actually fully informing you and your family is the implication of this federal regulation protecting your rights.

2 The Code of Federal Regulations at 42 CFR 418.50(b) makes it a Condition of Participation that "A hospice must ....make all ...covered services available on a 24-hour basis to the extent necessary to meet the needs of individuals for care that is reasonable and necessary for the palliation and management of terminal illness and related conditions." [emphasis added].

Search This Site

About Us | Disclaimer | Donations | Euthanasia Issues | FAQS

Find Hospice | Find MD Consult | Find Nurse Consult | Guide to Hospice

Help | Home | Hospice News Center | Hospice Regulations | Newsletter | Privacy Policy

HPA is a nonprofit, charitable 501(c)(3) patient advocacy organization

All material copyright of Hospice Patients Alliance ("HPA") unless otherwise credited.