Conversations about end-of-life care
Talking to your loved ones and doctors about your healthcare preferences helps you to explore what kind of care you want at the end of life. It’s the first step in making sure your wishes are known in case you are not able to communicate or make decisions during a health crisis.
Schedule an appointment with one of our Honoring Choices facilitators to start creating your advance care plan. Advance care directives guide your family and healthcare providers to make decisions for you if you are unable to communicate for yourself.
Understand your past as you look forward
We are all influenced by our upbringing, education, faith as well as our hopes and dreams. That’s why conversations with loved ones may be difficult to begin. They can expose differences between you and the people you love.
For example, a husband who is suffering from a terminal illness may be ready to stop life-sustaining measures. He may feel treatments are invasive or interfering with his ability to spend quality time with his family. His wife may be holding on to hope or just not ready to let him go.
Remember your conversations can bring greater closeness and clarity about how you want to live your life and spend your last days with your loved ones.
Write down your decisions
Written documents can help your family and doctors better understand your choices. They also give a clear guide about how to serve as your healthcare advocate if you are unable to communicate or make decisions. By writing down your wishes, you also can define what you need to ensure your family respects your choices.
Advance Care Planning is for Adults of All Ages
Documents for end-of-life care
Written documents give clear instructions about the kind of care you want at the end of life. By writing down your wishes, you can help your loved ones and doctors understand and follow your choices. That’s important if you are unable to make decisions or communicate for yourself.
We offer free assistance to help you prepare your advance care planning documents.
Important decisions to clearly state in your documents include:
- Appoint a healthcare representative to make medical decisions for you if you cannot communicate.
Specific advance directives
As of January 1, 2023, the state of Indiana made legislative changes to the Advance Directive documents.
Laws governing advance directives vary from state to state. Documents available in English and Spanish include forms to:
- Appoint a healthcare representative
- Authorize a Do Not Resuscitate order (DNR)
- Complete a Physician Order for the Scope of Treatment (POST)
Use these documents to start conversations with your family about your wishes. They can help you better understand the treatment options available and make decisions about what measures you want to be taken in certain circumstances. List the kind of health care you do or don’t want to receive if you cannot speak for yourself. A written document* and your instructions* (written and verbal) will help guide your appointed representative when speaking as your advocate with your healthcare providers.
*Documents must be completed in English per State regulation.
After you complete these documents, remember to give copies to your primary care doctor, the hospital and your family members.
Our glossary of terms explains specific words or phrases that relate to end-of-life care.
Pain management provides comfort at end of life
A common fear of terminally ill patients and their loved ones is that the patient will experience great suffering and pain. Many of us are more afraid of dying in pain than of death itself.
Start a conversation with your loved ones about a plan for pain management and palliative care to control symptoms and discomfort.
Pain management options include:
- Medications (narcotics and non-narcotics)
- Surgery and nerve blocks
- Relaxation therapies
- Good nursing care
Causes of pain
Terminally ill patients experience pain and suffering for a variety of reasons.
- Reluctance to tell others about their pain
- Unwillingness by providers and family to accept severity of reported pain by the patient
- Consideration of pain taken less seriously by providers than other aspects of the patient’s illness
- Lack of information about the medications and other effective and appropriate methods to reduce pain
- Fear that providing or taking narcotics will lead to addiction
- Lack of access to sufficient quantities of narcotics for patients who need very high dosages
- Fear of causing death by providing aggressive pain management
People with terminal illness may require extremely large doses of narcotics to control pain. Clinical studies show that taking narcotics for pain management rarely leads to psychological addiction. However, myths about addiction can cause serious barriers to effective pain management. Fears of causing death also can affect good pain management plans.
Team approach to care
We provide holistic care to aggressively manage pain for our hospice patients. Ask your physician about the right time to start hospice. Assistance with good pain management can provide a better sense of wellbeing at the end of life.
It is important to recognize that disease causes the death, not medications and procedures used to control pain. Pain management is provided simply to keep the dying person comfortable.
How to ensure good pain management
- Ask your healthcare providers about their approach to pain management caused by your illness. Different illnesses may require different approaches. Your provider should have a plan to ensure you have access to appropriate pain specialists.
- Consider trade-offs you are willing to make for pain management. Some people would rather endure more pain if it would mean they would be more alert.
- Let your caregivers know when you are in pain. You have a right to expect your pain to be taken seriously.
- Describe your pain as specifically as possible.
- How does pain affect your ability to do specific things?
- When is it better or worse?
- Where does the pain fall on a scale of 1 to 10?
- Follow the pain management plan that you and your providers put in place. The goal of good pain management is to prevent you from experiencing pain. Once you are in pain, it requires much more medication to bring the pain under control.
Life support maintains vital functions
Life support replaces or supports a failing function of the body. If you have a curable or treatable condition, doctors can use life support temporarily until the illness or disease stabilizes and the body resumes its normal functions. In other situations, the body may never regain the ability to function without life support.
When considering your preferences for life support, gather the facts you need to make informed decisions. Think about the benefits and burdens the treatment may offer you and your loved ones. Make sure to document your decisions in advance directives.
Potential benefits of life support
- Relieves suffering
- Restores functioning
- Enhances quality of life
Potential adverse effects of life support
- Causes pain or marked difference in mental abilities
- Prolongs dying process without offering benefit
- Adds to perception of diminished quality of life
Choosing to forgo life support is a deeply personal decision. When you are gathering information about specific treatments, be sure you understand why life support would be offered and how it would benefit your care.
Commonly used life-support measures
Make sure you understand the difference between not starting treatment and stopping treatment. No legal or ethical difference exists between withholding and withdrawing a medical treatment when following a patient’s wishes. This is particularly important to know in a clinical setting, where a patient may forgo potentially beneficial treatment out of fear that it could not be stopped.
It is legally and ethically appropriate to discontinue medical treatments that no longer are beneficial. Remember, it’s the underlying disease, not the act of withdrawing treatment, that causes death.
Glossary of Terms
Terms to understand about end-of-life care
Advance directive – A general term that describes one or more documents that may include living wills and medical powers of attorney. These documents allow a person to give instructions about future medical care if he or she is unable to participate in medical decisions due to serious illness or incapacity. Each state regulates the use of advance directives differently.
Allow natural death (AND) – The patient and family request that resuscitation (CPR) attempts will not be performed if cardiac arrest occurs. An AND allows the dying process to happen with full comfort measures. No other aggressive treatment will be performed.
Assisted suicide – Provide someone the means (drugs or a weapon) to commit suicide, knowing the person will use it to end his or her life. It is not legal in Indiana.
Brain death – Irreversible loss of all brain function. Most states legally define death to include brain death.
Capacity – As it relates to end-of life decisions, a person who can understand the medical problem as well as the risks, benefits and alternatives to the recommended treatment options. “Capacity” is sometimes used interchangeably with “competency,” but does not mean the same thing. Competency is a legal status recognized by the court.
Do-not-resuscitate order (DNR) – At the request of a person or the person’s family, a DNR instructs healthcare providers not to attempt cardiovascular resuscitation (CPR) in case of cardiac or respiratory arrest. To be valid, a DNR must be signed by a physician. An “out-of-hospital DNR” is written for people who do not want to receive CPR and are at home or someplace other than an acute care facility. Aggressive or supportive treatment may occur if a medical crisis arises. Patients may be kept alive with artificial nutrition, hydration, antibiotics and/or ventilation.
Healthcare representative - A healthcare representative is a person, choosen by you, to make healthcare decisions, including end-of-life decisions, if you are unable to make your own. For more information on end-of-life documents, please contact your healthcare provider.
Hospice care – A program for providing end-of-life care with comfort measures to support people who are in the final stages of a terminal illness. Hospice also includes support for the patient’s family while the patient is alive and during the time of bereavement – for at least a year after the patient’s death. Goshen Health offers hospice care.
Living will – A type of advance directive used for individuals to document their wishes for medical treatment during a terminal illness if they are unable to communicate. A living will serves to guide the family and doctors in deciding how aggressively to use medical treatments to delay death. A living will may also be called a directive to physicians, healthcare declaration or medical directive. As of January 1, 2023, the state of Indiana no longer has a standardized living will document. Consult with an Elder-law attorney for more information on a living will.
Medical (or healthcare) power of attorney – A document used by an individual to appoint someone to make decisions about medical care if the individual is unable to communicate. This document may also be called a healthcare proxy, durable power of attorney for health care or appointment of a healthcare agent. The person appointed may be called a healthcare agent, surrogate, attorney-in-fact or proxy.
Palliative care – A comprehensive approach to treating serious or terminal illness that focuses on the physical, psychological, spiritual and existential needs of the patient. The goal is to achieve the best quality of life by relieving suffering, controlling pain or symptoms and enabling the patient to achieve maximal functional capacity. Respect for the patient’s culture, beliefs and values is an essential component. Palliative care is sometimes called comfort care. All hospice-type care is palliative care, but not all patients receiving palliative care are hospice patients.
Physician Orders for Scope of Treatment (POST) – Not intended to replace a living will or medical power of attorney, a POST may be completed by a person who has at least one of the following:
- Advanced progressive illness
- Advanced chronic progressive frailty
- Condition caused by injury, disease or illness from which, to a reasonable degree of medical certainty, there can be no recovery and death will occur from the condition within a short period of time without the provision of life-prolonging measures
- Medical condition that, if the person were to suffer cardiac or pulmonary failure, resuscitation would be unsuccessful or within a short period of time the person would experience repeated cardiac or pulmonary failure resulting in death
The treating physician, advance practice nurse or physician assistant may execute a POST form. A POST addresses a person’s preferences for CPR, antibiotic use, artificially administered nutrition, and medical interventions, such as full comfort measures (allow natural death), limited additional interventions or full life-sustaining treatments. The document must be in English; translated versions can only be used for interpretation. A patient who is physically unable to sign may direct a person to sign on his or her behalf. Other state’s version of POST may be honored if similar to the Indiana POST. Only a legally appointed representative can sign for an individual.
Surrogate decision making – Allows an individual or group of individuals (usually family) to make decisions about medical treatments for a patient who has lost the capacity to make decisions and who does not have advance directives. Most states have passed statutes that permit surrogate decision-making for patients without advance directives.
Beginning July 1, 2018, Indiana law established a hierarchy of who will make decisions for you if you do not have a healthcare representative. The order of priority is:
- Court-appointed guardian
- Adult child*
- Adult sibling*
- Adult grandchild*
- Nearest other adult relative in the next degree of kinship who is not listed above
- An adult friend who has maintained regular contact with the individual and is familiar with the individual’s activities, health and religious or moral beliefs
- Individual’s religious superior if the individual is a member of a religious order
*If there are multiple members at the same priority level, then the majority of available individuals controls.
The following individuals may NOT provide health care consent:
- Spouse who is legally separated or has a petition for dissolution, legal separation or annulment of marriage that is pending in court
- Individual who is subject to a protective order or other court order to avoid contact with the individual who is unable to make their own decisions
- Individual who is subject to a pending criminal charge in which the ill individual was the alleged victim.
Withholding or withdrawing treatment – Foregoing life-sustaining measures or discontinuing them after they have been used for a certain period of time.
These websites may help you begin a conversation about end-of-life care with your family: