We’ve previously discussed the importance of making decisions about your life ahead of time, but what about decisions about your death? Your priorities for care during the end of your life may be quite different from those you have had previously and from what your family would want. Even if you are very ill, everyone needs to know that the final decision about your care is yours so long as you are able. This may require you to be assertive about what your wishes are.
While your healthcare providers may know what is best for your medical condition, only you know what is best for your overall well-being. This includes the choice to refuse further medical care. You may even consider asserting your right to die, if you live in a state that allows medical aid in dying.
If you have granted your Healthcare Proxy the ability to make life and death decisions, much of this section will apply to them as well.
When you are ready, you can make the important decision that it is time to stop or refuse new treatments for your condition and focus on making your end of life easier. This may include stopping other life-sustaining treatments, such as tube feeding or IVs if you are not able to eat or drink.
There are many reasons you may feel your current care is no longer needed or wanted. The care may be:
After you have committed to your decision, talk to your healthcare providers. They may be able to help you understand the realities of your situation and assist you with the decision, give you their medical advice on alternate treatment and your prognosis, provide you with the options for comfort or palliative care, and/or possibly help explain your choice to your family.
You must then take the difficult step of talking to your family and caregivers about how you would like to experience your final days. Each person will react differently to this, but you can reassure them this is what is best for you. You may need to prevail upon them that only you can make such choices about your end of life care and it is solely your right to do so.
If you think your healthcare provider will be reluctant, it may be better served to work things out with your family first and then speak with your provider as a united front. It is a deeply personal choice, and only you will be the best one to know which approach may work better for your situation.
Once you have made your choice, have your healthcare providers’ support, and, hopefully, have the blessing of your loved ones, work with them to settle on the most compassionate and appropriate care that will make your remaining days as comfortable and fulfilling as possible. Some call this process “Dying Well.”
The “Hospice/Palliative Care” and “Seeking Emotional Support and Grief Counseling” sections will have details on the types of care available to you to make the most of your last days.
It is your right to make the final decision on any treatment you are offered, but the choice to stop or refuse treatment of a terminal illness is often resisted by healthcare providers and family. When this happens you should be sensitive to their position, but also advocate for your right to decide how to experience the end of your life. Although this is not a debate, communication is the key.
While it is ultimately your call, it will be best if everyone comes around to the same page but it may be a gradual process. To be sensitive to their position, you must first listen carefully to what they say so you know what points you have to make. Do research if you have to, but the most important thing is to tell them that this is about your wishes and what is best for you.
You may reach a point where you just want it to end, but merely stopping treatment will not result in your immediate death. You may want your physician to help you die. Only you can request this; your Healthcare Proxy cannot under any circumstances. As you can imagine, it is very controversial.
While people with a painful terminal condition may eventually find pain medication ineffective, they are rarely among those who request physician-assisted death, nor are those who have intractable suffering for other reasons or are experiencing depression. The most common feelings associated with the desire for death are a loss of dignity, the inability to experience any joy or pleasure, and a loss of control of their lives.
In states with physician-assisted death, frequently referred to as “medical aid in dying,” it is a strictly controlled process that protects both you and your physician from abuse or liability. The paperwork alone can be a hurdle, but there are safeguards in place, with little variation among states where it is legal.
These are the measures most states have to assure that physician-assisted death is right for you.
In states where this is legal and you meet the requirements, your physician can prescribe a medication that will quickly result in your death, although it does not always happen this way.
Although your physician makes the determination whether or not you will get the prescription, once you have it you then have the choice of taking it when the time comes. It is illegal for family members to coerce or otherwise force you to take it before you are ready. It is also against the law to give away your medication to someone else, even if they have a terminal illness. About two-thirds of people who get the prescription will eventually make the choice to take it. For the remainder that do not, it is often enough to know that they are in charge of their experience and have the option available to them.
Not all physicians are comfortable with providing aid in dying. Even those physicians who do this willingly can have mixed feelings and experience guilt. If yours is not supportive, rather than trying to urge them to do so, you should seek out a physician who is willing to assist you.
There are studies that show that stopping eating and drinking or sedation may be a more comfortable and peaceful way to die.
Before proceeding with this process, there are things to consider about suicide which might affect your decision.
In 2006, the Supreme Court chose to make the legality of physician-assisted death a state matter (Gonzales v. Oregon, 546 U.S. 243). As of 2020, ten states currently have laws that allow physician-assisted death for terminally ill patients. Three states have pending legislation. Each state has slightly different rules about which patients qualify.