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Planning for the Future Includes Making Your Wishes Known

Anyone who has been to the doctor or admitted to a hospital has been asked the question “do you have an advance directive?” It is a patient’s right to know about and have advance directives, including a Living Will or Power of Attorney for Health Care Decisions (POA). However, in my experience, many people are uncomfortable talking about end-of-life care because it involves thinking about their own death. Since they avoid talking about it, they may not understand just what advance directives are and why they are important to have. Looking ahead at end-of-life medical care can be overwhelming and scary, but it helps you to take control of your care by telling your health care providers and your family about your wishes and the type of care you want as your disease or health condition progresses. Not only can it give you peace of mind about your future, it can make it easier for others to make decisions for you if you become too sick to make them yourself.

Advance directives are part of “advance care planning,” which is simply planning for your care before you need it. When making plans, it is helpful to have an understanding of the progression of your illness, anticipated outcomes, and treatment options, which may include not starting or stopping dialysis. Talk with your doctor to make sure you understand and then decide on the right care for you. You can always change your decisions later. This article will review the two types of advance directives for health care decisions and some of the reasons why people chose to make them.

Living Wills

A living will tells your doctor or health care provider “in writing” what type of medical care you these decisions for yourself.

With a living will, you may be able to:

  • Accept all treatments recommended by the health care provider,
  • Accept some treatments and refuse others, or
  • Refuse all recommended treatments.

These treatments may include:

  • Cardiopulmonary resuscitation (CPR) to attempt to revive a heart that has stopped beating;
  • Tube feedings, including giving food, water or both through a tube into a vein or the stomach;
  • Artificial respiration, which is a machine (ventilator or respirator) that breathes for a person through a tube in the throat;
  • Antibiotics to fight infection;
  • Dialysis for kidney failure, either hemodialysis or peritoneal;
  • Surgery such as heart bypass, gall bladder removal, etc.;
  • Blood transfusions or blood products; or
  • Medications, including pain medications for comfort even if you refuse other treatments.

You may also want to include any situations in which you would want dialysis to be stopped. These situations could include, if you:

  • Do not know or understand what is happening around you; and/or
  • Have to totally depend on others in your daily living activities.

Power of Attorney for Health Care Decisions (POA)

A Power of Attorney for Health Care Decisions (POA) is a document where you pick someone else to make decisions regarding your medical care. Another name for this document is called “durable power of attorney for health care.” You choose a person to make your health care decisions for you if or when you become too sick to make them yourself. The person you have chosen is called your “agent” or “proxy”, and acts with your best interest in mind. You should choose a person you can trust and who knows your values, beliefs, and wishes. They should be able to share your wishes with your doctors and other health care providers.

There are a few other things to consider when making your advance directives, including:

  • It is your right to have an advance directive but you are not required by law to have one.
  • You do not need a lawyer to make an advance directive.
  • Be sure to tell your family, friends, all health care providers about your advance directive.
  • Make lots of copies; keep at least one copy for yourself and store it in a safe place.
  • Give copies to your Living Will and/or POA to your dialysis clinic, primary care doctor, and hospital to keep in your medical record. Your advance directives do not get shared automatically.
  • If you change your advance directive, you need to tell everyone you have given copies to and give them the new one. If you cancel it, you need to get back all of the copies.
  • If you are religious, you may wish to speak with your family and your religious advisor to understand your religion’s views in regard to advance directives.
  • An advance directive goes into effect if and when you are not able to communicate and make your own health care decisions. Some
  • patients chose to have their POA help in making decisions; however, health care providers should have you involved in all decision-making and have your consent.
  • • Having an advance directive does not affect the quality of your care.
  • • Having an advance directive does not affect life or health insurance.

Why have Advance Directives?

Many people with kidney disease say they feel better knowing that they talked with their family and health care team about their wishes for the future.

  • They say that they …
  • Have peace of mind knowing my wishes will be respected.
  • Feel a sense of control over their future.
  • Know they have made sure that they will be taken care of with dignity, through pain relief and other chosen treatment.
  • Feel they will be less of a burden to their family, who will not have to make difficult decisions on their behalf.

Advance directives are truly a gift to yourself, your family and health care team because they make sure that your wishes are honored if or when you are unable to share or make those decisions for yourself. It can be difficult to think about but the paperwork really is simple and your dialysis clinic or hospital may have forms available or may direct you to where you can find them.

*This article does not replace any legal guidance. Your state may have additional laws addressing advance directives. The Area office on Aging may also have information about this or you can ask your social worker. You can find your Area office on aging at http://www.aoa.gov/.

*“Support for the preparation of this document was provided in whole or part by Contract Number: #HHSM-500-2013-NW012C, funded by the Centers for Medicare & Medicaid Services, an agency of the U.S. Department of Health and Human Services. The content of this publication does not necessarily reflect the policies or positions of the Department of Health and Human Services, nor does mention of trade names, commercial products or organizations imply endorsement by the U.S. government. The author assumes full responsibility for the accuracy and completeness of the ideas presented.”