Glossary of Terms for Advanced Care Planning

Perhaps you are thinking about situations where you may not be able to make decisions about your own health care. This may be because you have a chronic illness that may take away your mental or physical capabilities, or you may be about to go to surgery, major or minor, and want a backup plan if something happens to you. You may just be thinking about your future and trying to protect your own health or your family if there are big decisions that need to be made without your input. You may have heard of an Advanced Directive, or Living Will, and want to put one in place, but are confused about some of the terms you’ve read about it. Here is a glossary of common terms related to advanced care planning that may help you understand this concept better.

Common terms

Advanced directive

This is a legal document that usually consists of two parts, your Living Will, and a Medical Power of Attorney. This gives your medical team and family members directions for your care and designates a person to carry those directions out. Every state has different rules about advanced directives, so be sure to look up the specific instructions for your state.

Coma

This is a state of being alive but not being conscious. People in comas cannot move or respond to the people around them. This can be the result of illness or injuries and trauma.

CPR or CardioPulmonary Resuscitation

CPR is series of procedures that is used when a heart stops beating in order to restart the heart. This can include pushing on the chest, using electric shock, and/or using medication to restart the heart and breathing.

DNR/DNI

Do Not Resuscitate/Do Not Intubate is an order that a patient can request to state that if their heart should stop beating, or they should not be able to breath on their own, CPR will not be given to restart the heart (DNR) and a tube will not be placed to help the patient breathe until they can breathe on their own (DNI). These orders are placed in a patient’s chart and have to be followed by the patient’s medical team. DNR/DNIs can requested separately or together, and can be changed at any time. These orders MUST be signed by a physician to be valid, and there needs to be separate orders for hospitals and home.

Hospice

This is care that is given at the end stages of patient’s life. Hospice care is meant to comfort and not to treat or cure and is usually reserved for the last few months of a patient’s care. Hospice care can be given in a patient’s own home, or at a hospital, nursing home or specialized Hospice facility. This may also be a benefit in the patient’s insurance.

Living will

This is the written portion of an Advanced Directive that states your wishes about your medical care if you are unable to communicate or at the end of life. Again, every state has different rules about Living Wills, so be sure to look up information specific to your state. Living Wills may need to be witnessed and notarized, so think about preparing one sooner than later.

Medical power of attorney

This is the person you trust to make healthcare decisions for you if you are not able to make your own, and is an important part of your advanced directive. This person may also be referred to as your Healthcare Proxy, Durable Power of Attorney, or Healthcare Agent.

Palliative care

This is care that is about improving quality of life, providing comfort, and dealing with pain management. While palliative care is an important part of hospice, it can be given at any point in time during a chronic or terminal illness. Palliative care can be given in conjunction with curative treatment, and can be given in both inpatient and outpatient settings.

PEG or percutaneous endoscopic gastrostomy

This is a tube that is surgically inserted into the stomach to give food and liquid when a patient cannot eat or drink on their own.

Ventilator

This refers to a machine that is used to help a patient breathe when they are unable to do so on their own. It works by pushing air into a patient’s lungs through a tube inserted into a person’s airway.

Withdrawing/Withholding treatment

This is the process of stopping a treatment that may have been used for an extended period of time, but is no longer improving a patient’s quality of life, or may be causing more harm than good. This treatment may be keeping a person alive, so it may need to be written into an advanced directive, or may need a physician to state that this treatment is no longer helping the patient.

View References
  1. Theconversationproject.org. https://theconversationproject.org/wp-content/uploads/2015/06/Glossary-of-Terms.pdf. Published 2014. Accessed November 5, 2018.
  2. Glossary. Get Palliative Care. https://getpalliativecare.org/resources/glossary/. Published 2018. Accessed November 5, 2018.
  3. Death With Dignity. Glossary of Terms - Death With Dignity. Death With Dignity. https://www.deathwithdignity.org/assisted-dying-glossary. Published 2018. Accessed November 5, 2018.

Comments

View Comments (2)
  • Sam Collins
    1 month ago

    Thank you for all the good information. We should all prepare for death when we are healthy and have a clear mind. Death is a part of life for everyone of us. I have said that we should prepare for death because it is truly the last act of love to your families. When my mother died the only thing that we spent money on was the flowers that we wanted to get for her funeral. She got it just the way she wanted. It really took a lot of stress off of the family. Some people have a hard time talking about the end of life, but no one will escape our bodies from giving up. When I was given the diagnosis that I had prostate cancer it was like someone hit me in the gut and knocked the breath out of me. So after about a year or two my wife and I started talking about death. We made a living will for each of us and set things up for our burial. Truly this should have been long before I got Prostate Cancer. We have had to help pay to bury three members of our family and it become a hardship for those in the family. We must talk about treatments and side effects for PROSTATE CANCER. Hope is so important to fight the good fight. We can live so much longer now days with all the new treatments out there. We should do what ever we need to have good mental health. I always try to laugh a lot, but I will be the first to admit that it’s not always easy. When your sick and hurt you just want to feel good again. We need to face the reality that we my died from our disease. Many of us will die from something else. Death is not just our loss but also our families and friends too. I am doing everything I can to prepare for that time when it comes. I have had many friends and family that died from cancer and other illnesses. I have a friend that is on hospice right now because his prostate cancer has brought him to a place where he is so tired of fighting. Being his friend I don’t want him to stop fighting, but I have learned that you have to let each person live their own journey and just love them through it. There are those that will fight to the end and others that will grow tied of the fight. They just want to enjoy what time they have left with out treatments and all the side effects that comes with them. When you know that there is no cure for you a few more months my or may not be ok with you. I don’t believe that there is any right way to fight. One of my friends was given six months to live so he refused treatments for pancreatic cancer and lived almost six years. Another friend was given a short time to live so he refused treatments and he died in a week with small cell cancer. My buddy that is on hospice now has been fighting prostate cancer now as long as me. I have been fighting for over 13 years. I do not believe there is any right way to fight your illnesses, but I would encourage all to educate yourself on your illnesses. What has helped me I believe is God, education about my illness and laughter. Even though I take this Prostate Cancer serious I try to laugh at my losses and make others laugh. It really breaks the ice. God bless you in your journey.

  • Richard Faust moderator
    1 month ago

    Thanks for writing Sam. I honestly feel that no else here has more to say on planning and each individual making their own decisions than you. You mention your friend in hospice, so thought I would take this opportunity to post this article on things to know about hospice: https://prostatecancer.net/living/7-things-about-hospice/.

    In addition, you mention maintaining a positive attitude and laughter. We started this forum on how humor and laughter helps cope with PCa and I encourage everyone to think about how it helps and contribute a thought if you like. Best, Richard (ProstateCancer.net Team)

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