Without question, the medical industry has made amazing advances in recent decades. But for people whose illness cannot be cured or whose independent functioning cannot be restored, this progress presents a modern dilemma. It requires personal decisions about how much treatment is enough, where the line should be drawn between therapeutic and unwanted treatment, and — the most difficult decision for many — how long life should be prolonged after it has ceased to be “life” as you define it.
Medical interventions are commonly introduced when biological functions can no longer maintain themselves. Also known as “life-sustaining measures” or “life support,” these interventions often include artificial ventilation to support breathing, medications to stimulate heart function, dialysis to support failing kidneys, and artificial nutrition and hydration for those who cannot swallow.
Many states’ advance directive forms mention at least two scenarios in which life-sustaining interventions could be applied: permanent unconsciousness and terminal illness. You can indicate on the form whether or not you would want continued life support under those circumstances. Often, people who are terminally ill do not want life support because it would only prolong the dying process.
To further personalize the directive, you can cross out and initial any scenarios you don’t wish to include, and you can note anything else you feel is important. In making decisions about life support, consider not only terminal illness but catastrophic events such as sudden cardiac arrest or traumatic brain injury
REQUESTING WITHHOLDING OR WITHDRAWING TREATMENT
Life support is considered “withheld” when a person or their representative instructs healthcare providers not to begin a medical therapy to sustain life, and the expected result is that the person will die without it. This option is often selected by people who are terminally ill and have already begun the dying process.
Life support is considered “withdrawn” when a therapy that has been initiated is stopped. Often the person — or their representative or family members — and the healthcare provider will agree on a time-limited trial of life-support therapy, hoping for improvement. If the person does not improve within that timeframe, the therapy is stopped, and a natural dying process is allowed to occur.
You can direct your own medical care if you are conscious and capable. This changes once you become unable to communicate for yourself. Some state laws require you to record in writing your preference to have life support withheld. In these states, life support is always initiated — unless you have written documents requesting otherwise. Even your designated representative cannot change this. If you want life support to be withheld or withdrawn after a certain period (three days, three weeks, three months), you need to indicate this in your advance directive.
SPECIFIC OPTIONS TO CONSIDER
At the end of life you should plan for the care you consider to be most important. The full range of end-of-life options can support those who want little to no care or those who want more care. At the end of life, some people may choose to accept all medical interventions available to them. These options can range from medications and artificial nutrition (feeding tubes) to respiratory support, dialysis, and more. Asking questions and discussing options with your healthcare team will help you determine the best plan for you.
Everyone should have the information they need to make their own decisions with nonjudgmental support for their preferences and values. There are many options available, and some may vary by state. Examples of options for care at end of life include the following:
LIFE-EXTENDING CARE
- Heart failure support: Heart failure is a chronic condition where the heart muscle doesn’t pump blood as well as it should. As the condition progresses, people may need medication(s) to help their heart pump more effectively. In severe or advanced cases, people may require hospitalization in order to receive continuous IV medications or surgically inserted assistive devices.
- Respiratory support: Many disease processes can affect the lungs and the ability to breathe effectively. Options that can help support breathing include oral medications, inhalers, nebulizers, supplemental oxygen through a simple nasal cannula, and CPAPs. Sometimes illness requires a more serious short-term or permanent intervention. This may include a high-flow nasal cannula, BiPAP, Trilogy or mechanical ventilation (“breathing tube”). If mechanical ventilation appears to be needed long-term for more than two weeks, a tracheostomy may be recommended. A tracheostomy is a surgically created hole in the trachea (windpipe) that offers an alternative way to provide oxygen and ventilatory support to the lungs.
- Artificial nutrition and hydration: There are a number of reasons why people may need artificial nutrition and hydration, and a variety of ways it can be provided. One way this can be provided is through feeding tubes. Short-term artificial nutrition and hydration can be provided through a nasogastric (NG – nose to stomach) or orogastric (OG – mouth to stomach) tubes. Long-term options can include surgically placed feeding tubes including gastrostomy (PEG, G, or GJ) tubes, which are inserted directly into the stomach. In some specific instances, nutrition can be provided directly into the bloodstream; this is called parenteral nutrition.
- Supplemental feeding: Sometimes people need additional calories or more nutrition than they can eat on their own. Sometimes people are able to eat but struggle to get enough calories or nutrition. In this situation, supplemental nutrition can be provided orally, intravenously (through a vein) or through feeding tubes (short-term or long-term). Depending on the disease process, this may not actually prolong life. Spoon-feeding or hand-feeding is an option for those who have the ability to chew and swallow, even if they have lost all cognitive abilities. If such a situation is a concern, you may document that you decline such spoon-feeding as part of your advance directive.
HOSPICE
Specialized type of care that focuses on compassion and quality of life and care during the final months of life. Hospice care is focused on maintaining or improving quality of life while managing symptoms for someone whose illness or condition is considered terminal or end-stage. Patients and their loved ones are supported by a team of professionals who specialize in end-of-life care and addressing the physical, emotional, and spiritual issues that often accompany terminal illness. Hospice can be provided in the home or in residential facilities such as assisted living, memory care, or skilled nursing.
PALLIATIVE CARE
Specialized medical care for people living with a serious illness. Specialists focus on managing symptoms, coordinating care, and maximizing quality of life. Palliative care is not limited to end of life, but can be provided at any stage of illness, often as an additional layer of care and support in coordination with the patient’s existing care team.
SYMPTOM MANAGEMENT
Life with serious and terminal illness is often accompanied by symptoms and side effects that can cause distress and discomfort. Symptoms such as nausea, physical pain, constipation, depression, weakness, appetite changes, and shortness of breath are very common. Managing these symptoms to ensure comfort is the most important part of any care plan. Open communication with the healthcare team is essential for making sure the right medications and proper doses are provided.
PALLIATIVE/TERMINAL SEDATION
Refers to the practice of relieving extreme pain and suffering at the end of life through the use of specific medications that reduce consciousness. While sedated, patients continue to receive comfort care and eventually die as a result of their natural disease process.
VOLUNTARILY STOP EATING AND DRINKING (VSED)
A person may choose to control their dying by making an intentional decision to stop all nutrition and hydration. Sometimes referred to as terminal fasting, VSED is an option for a decisionally capable adult who consciously refuses food and fluids in order to advance the time of their death. VSED is a process that requires support for both the patient and their caregivers.
