Medicine today has the power to prolong life. Many of us will live longer because of medical advances and prevention. Sometimes however, it simply prolongs death or maintains a poor quality of life. For this reason, more doctors, patients, and families are turning to end of life care. It focuses on the dignity, quality, and sanctity of life if a cure is out of reach.
There are many parts to end-of-life care. They include emotional and philosophical concerns, legal steps, and types of care. It is important that each of us should think about these factors ahead of time. Ideally it is done with family, social, and legal support before a medical crisis occurs. This can prevent confusion and ease stress in a difficult time.
Emotional and Philosophical Matters
You can begin by asking yourself some tough emotional questions:
- What are your fears? Some common concerns include: Pain or loss of dignity, machines keeping you alive, or dying in a strange place
- Can you fill in the blank: "My life is only worth living if I can ___”. Is life defined by a heart beat or a working brain?
- Whom do you want to make decisions for you if you are not able to tell people what you want?
Seek advice from others in your life such as family or religious leaders.
Above all, make sure that family members know what your choices are. If possible, put your choices and values into writing. Make sure people know where these are written down.
Legal Options and Medical Orders
For most of us it is very hard to imagine how we will feel when faced with a serious illness or injury. It is perhaps only human nature to wait until the crisis is upon us. Unfortunately, you may not be able to share your choices at that time. You may be unconscious or unable to think well. Fortunately, there are tools to help:
Advance directives are written legal documents. They state your wishes if you can no longer speak for yourself. It lets your medical team and loved ones know your choices so they don’t have to guess. The directives can prevent decisions you would not want for yourself. Advance directives often include:
Naming Healthcare Proxy
A healthcare proxy is someone you choose to make medical decisions for you. They will only make decisions when you are not able to make them for yourself. It is also called power of attorney for health care.
This person should be someone you trust. It is important for them to know you well. Your proxy does not have to have specific instructions from you. You should share what general treatments you would want or not want. They should also know if you have other documents like a living will.
A proxy plus a living will is a more secure way to prepare for your end-of-life care.
A living will states what advanced care you want or don’t want. For example, would you want a feeding tube or breathing tube? Would you want a surgery that will not cure you but will help you live longer?
A living will is also only used if you are unable to tell your medical team what you want. These instructions for treatment or refusal of treatment can be made as broad or specific as you wish. For example:
- You can ask that your life be prolonged as long as possible.
- You can state that you do not want extraordinary care to maintain life.
- You may make this a standard for any injury or illness that will result in constant care.
- It may also be because of expected poor quality of life.
- You can also address specific issues that can arise at the end of life. This includes dementia, trauma, or coma.
Do Not Resuscitate or Do Not Intubate
A do not resuscitate (DNR) order instructs medical staff not to bring you back to life if your heart stops or you stop breathing.
A do not intubate (DNI) order instructs medical staff to not use a breathing tube. The tube is needed to help you breathe.
These orders are usually only made by people who are in end-of-life care. A doctor must sign the order before it will be carried out.
Physician's Orders for Life-Sustaining Treatment
Physician's Orders for Life-Sustaining Treatment (POLST) is a different type of medical order. It is a plan made when you have a specific illness or have become very frail. POLST is made with your medical team. It will help you make decisions for things that are likely to happen with your health issues. It may include a DNR, DNI, decision on feeding tubes, and other advanced medical care steps. Palliative care is a medical service for people with severe illnesses. They not only deliver medical care but can also help you with care decisions. They may help you decide how to shape your POLST.
The POLST is a medical order. It remains in your medical records. This will allow it to move with you from one setting to another. Even emergency staff will be able to access it to make sure your wishes are followed. This form is easier for your medical team to access than legal documents like advanced directives.
You will need to fill out documents for each of these solutions. It will become part of your personal medical file. For more information, you can talk to a lawyer, look for books about this topic, or use the resources listed below. Also, check your state rules for end-of-life care documents. They can be different between states.
The last days of life may be spent in a hospital. This will probably true if you are seeking a cure or aggressive treatment.
Hospice may be a better if you are looking for supportive care. The sole focus of hospice care is comfort and quality of life during the last days of life. This type of care does not aim to postpone or speed death. It is instead focused on relief from pain and discomfort. Care may be given in a care center or in your home. If you choose to stay at home, you will need to make plans with your care team.
No one wants to think about end of life. But when life support no longer offers hope of quality living, decisions must be made. No one can make such decisions better than you. Advanced decisions can give you a voice when you can’t speak. It can also reduce stress on you and your family. Start talking with family and friends today.
Center for Healthcare Decisions
National Hospice Foundation
Canadian Hospice Palliative Care Association
Advance Care Planning: Healthcare Directives. NIH National Institutes on Aging website. Available at: https://www.nia.nih.gov/health/advance-care-planning-healthcare-directives. Accessed May 24, 2021.
About the National POLST Paradigm. National POLST Paradigm website. Available at: https://polst.org/about/. Accessed May 24, 2021.
Decisions series. Center for Healthcare Decisions website. Available at: http://www.chcd.org/docs/Dec.pdf. Accessed May 24, 2021.
Last reviewed May 2021 by EBSCO Medical Review Board Monica Zangwill, MD, MPH Last Updated: 5/24/2021