Thinking and planning for one’s death is often difficult and overwhelming for each of us. We would rather hope that death would never come. However, many of us will face prolonged illnesses and we will have to make tough decisions regarding our healthcare and our lives. In order for this process to occur with as little stress as possible we share the following recommendations to help you think about and address these difficult questions:
1. Why is communication with your family and doctor so important?
Talking about and planning for your death is a way to ensure that you experience the best quality of life by your standards until the last possible minute. You know better than anyone else how you would want to be cared for if you were not able to recover from a serious illness or injury. Illness may prevent you from being able to express your wishes, so it is imperative that someone close to you can express these wishes for you.
2. How do I begin?
Spend some time answering the questions below for yourself. This will help you prepare for very important conversations that you will have with your family and your doctor.
A. If I could plan my death, what would it look like?
Now may be a good time to think of your definition of a “good death.” For some people it means dying after all potential medical therapies have been tried to save your life regardless of its effect on your quality of life. For others, having the ability to talk, eat, and live independently are of extreme importance and if this is jeopardized then medical interventions are unnecessary.
B. Where do I want to die? At home? In a hospital or medical facility?
Some people may envision spending their last days with their family or friends in the comfort of their home. Others would prefer to have nurses care for them in a supervised environment where their loved ones may come and visit often. There are those that would like every effort to be made to prolong their life and would prefer that physicians be involved in their last moments by pursuing aggressive care possibly in a critical medical environment.
C. Who would I like to care for me at the end of life?
Many patients are unable to perform several activities of daily living towards the end of their life. Examples of these include bathing, dressing, cooking, and taking prescribed medications. Some may prefer that their spouses, children, or other loved ones help them perform these duties. Others may prefer qualified professionals to either help them in a facility or come into their home.
D. Who would I like to make my medical decisions if I were unable to do so?
Sometimes people are unable to make their own health decisions towards the end of their life because of the critical nature of their condition. Doctors may need to ask someone close to you to make important decisions such as would you want to be kept alive with “machines” if your chances of living a normal live were slim. It is important to designate someone close to you to help make these decisions. This person should be someone who understands your values and wishes as you approach the end of life.
Sometimes people would prefer to have several members of a family make a consensus decision regarding your important health decisions. If this is important to you, open and honest communication with several members of your family will be helpful in eliminating potential disagreements regarding important decisions.
Occasionally people have a friend or loved one that they would not like to be involved in making health care decisions. This is should be explicitly expressed.
E. Are there any treatments that I particularly want to receive or refuse?
If a person is in critical condition, many medical therapies are offered to patients with the attempt of prolonging their life. However, some patients do not want certain procedures done even if they become very ill. For instance, some patients do not want to be placed on “life support” which may mean being placed on machines which take the place of the normal job of your lungs, heart, or kidneys. Below is a list of common procedures or treatments that may occur at the end of life:
1. Intubation / Mechanical Ventilation: When a patient is unable to adequately
breathe on their own, doctors may insert a breathing tube into their mouth or neck that gives oxygen to their lungs and the rest of their body in a controlled manner. Usually patients are asleep when they are on this machine and they are being carefully monitored.
2. Extra Corporeal Membrane Oxygenation (ECMO): This machine may take the place of your heart and lungs if they are not working properly and need time to recover from an injury or an infection.
3. Dialysis: This is used to replace the job of your kidneys if they stop working. This is a procedure to clean out your blood of waste products.
4. Cardiopulmonary Resuscitation (CPR): In order to restore the normal heart beat, health providers will press very hard on the chest rapidly, attempt to force air into the lungs, and sometimes use electricity to shock the heart into its normal rhythm. This is called defibrillation.
Some patients will sign a “Do Not Resuscitate” or “DNR” request which simply states, if your heart stops or if you stop breathing you would not want health professionals to proceed with the actions listed above.
5. Tube Feeding: The body needs nutrition to stay alive and sometimes patients may not be able to eat food through their mouth. A tube can be placed through the mouth into the stomach, through the nose into the stomach, or through the skin of your abdomen into your stomach or small intestine. Also nutrition can be given through your veins. Some patients do not wish to have this sort of food if they are unable to swallow it through their mouth.
F. Do I have any particular fears about medical treatments that I may receive towards the end of my life?
Some patients are afraid about procedures that may happen to them if they are very ill. For instance, some patients fear organ donation because they may believe doctors will give away their organs while they are still alive. Some patients may fear procedures like large IV’s or surgery without pain medications. Others may fear starvation from food while in the hospital. These fears should be addressed with your personal doctor so they can explain the proper procedure for organ donation, pain management, and nutrition.
G. What kind of treatment would I want if I were in a state of prolonged unconsciousness and was not expected to recover?
Patients are often willing to accept many potentially life prolonging procedures if they are temporary. However, when the chance of living through a serious illness is low, some patients wish to have these procedures discontinued. For instance, a patient may agree to have mechanical ventilation if they have severe pneumonia. However, if it appears that they will not be able to live without the breathing machine, they may wish to not be kept alive while dependent on this machine.
H. What role does religion or spiritual beliefs affect my attitude towards dying and death?
Sometimes people have religious beliefs that may affect how they spend their last days. Maybe you have spiritual beliefs that may help you with coping with illness. Perhaps there are certain prayers or religious experiences you would like to attain prior to dying. Some people have certain spiritual activities that they request to participate at the end of life. You should let your family and your doctor know your wishes regarding religious or spiritual matters so that your preferences are respected.
I. What role should finances play in my death?
Medical costs often escalate towards the end of life. Knowing who will be responsible for these expenses will help reduce potential stress for you and your family. You should be familiar with what services insurance and government programs will cover. Funeral costs should be discussed with your family.
3. When/how should I talk to my family?
Your family will likely feel uncomfortable bringing up this subject with you. It is essential that you take the initiative to express your wishes before a crisis hits to ensure that your wishes are honored. Opportune times to have these discussions are at family gatherings or holidays. Once you have answered the questions above you should designate someone to make your medical decisions for you if you are unable (health care agent). This person should know your wishes regarding end of life care. These issues should be openly discussed when the family is together so everyone is aware of your wishes. This is important because some family members may be reluctant to decline life prolonging treatment without a prior clear expression from you. Here are important questions to ask of your health care agent:
- Are you comfortable with making medical decisions for me if I am unable to make them for myself?
- Will you respect my wants and needs even if you do not agree with my choices?
- Will you seek out information about my disease and what we should expect as I get closer to the end of life?
After you have chosen your health care agent and discussed your wishes with them and your family, you should begin to write an advanced directive (or fill out a form).
4. What should I discuss with my doctor?
It is important to choose a physician that you trust to help you and your family make decisions about your care. Here are a few topics to discuss with your physician in the presence of your health care agent.
- Talk about your doctor’s plan for pain management and uncomfortable symptoms
- Talk about your definition of quality of life and your desire to preserve it as much as possible
- Specify whether or not your doctor can speak candidly about your health issues with your family
- Review and modify your advanced directive with your doctor
- Ask your doctor if they are supportive of hospice
- Determine if your doctor will be available when you are sick and close to the end of your life.