The Living Will Process Through the Eyes of a Nurse

The Living Will Process – Through the Eyes of a Nurse
Audrey Friedman RN, OCN, CLNC

No one ever thinks that they will be unprepared for an emergency… we all have very important things to do, like get the kids ready for school, grocery shopping, work in the garden, or watch the movie on television that we’ve been waiting to see all weekend.

You may have even thought about putting an Advanced Directive together, or discussed it with your spouse or your doctor. Maybe you don’t know how to get started, or how to get the proper forms. Maybe you want to talk about it, but your spouse or family doesn’t. Those papers keep getting farther and farther away from being completed.

A 56 year old man is having trouble breathing after a heart attack. He lays in bed, with an oxygen mask over his nose and mouth, to help him breath better. He is so weak; he can only moan words but not move his body. His granddaughter and the nurse sit on the bed next to him to get close to him and hold him. He keeps saying over and over again, “I’m falling, I’m falling…” They know he is safe in bed, and they know what he is really saying… he is dying. His wife is having difficulty seeing her husband in this condition. He has been sick with heart problems for a long time. She cannot bring herself to even come in the room to see him, touch him, or whisper to him that she loves him. She pushes away conversations from the nurses and doctors about hospice care, or whether or not to resuscitate him if his heart stops beating. The patient never had a chance to talk to her about his wishes. He never had the chance to tell her he didn’t want chest compressions, or that he only wanted to be pain free, and not have any more treatment, even if that meant he would die a little sooner.

During the night, the patient stops breathing, and the doctors put him on a ventilator to breathe for him. He is transferred to the intensive care unit, and by the morning he is covered in wires and tubes. He doesn’t look like himself anymore. His color is pale, his face is swollen. His wife can’t reach over him to kiss him because there are tubes in his mouth. His hands are cold when she touches him. The nurse explains that his hands are cold because medicine that he is receiving is keeping all his circulation going to his heart, to keep it beating, instead of his arms and legs. His wife asks for a warm blanket to cover him. She looks at him, and tries to see the man she knows under all those wire and tubes. Over the next few days, nothing gets better. He still feels cold to her hands. He is still on the ventilator, with intravenous medications keeping his heart going. Her family is with her, at his bedside, and the nurses keep talking to her, but she can’t hear what they are saying. She is trying to look past the swollen face, the red and swollen eyes that are closed and won’t talk to her.

When the doctor comes to talk with her today, he tells her that her husband is not improving. He says that his heart will not recover and that he will not wake up. He sits with her and talks over options of treatment or to allow him to die naturally. This time she listens, and understands what the doctors and nurses are telling her.

When it comes to making decisions about your life,
Who should be in charge?

Mrs. Brown was only forty-nine years old. This was her seventh treatment for cancer. She knew that her cancer wasn’t curable. That meant that she would have to keep having some kind of treatment forever. It meant coming to the doctor’s office every week. Having her blood drawn and spending hours every week in the clinic getting some kind of treatment. Whether it was chemotherapy, or medicine and intravenous fluids because she was nauseated and didn’t want to eat. She used to love to cook, even if it was only for a few people. She could whip up special dishes in the blink of an eye, and without a recipe. Now she couldn’t even stand the smells in the kitchen. She decided to have a talk with her husband about a Living Will form that she saw in the clinic yesterday. They had never talked about it before. They had always assumed that she would get all the treatment they could offer her, because she had been determined to fight the cancer with all her strength. Now it wasn’t working. And, the doctor told them yesterday that she could try other treatments if she wanted to, but that it was becoming clear that the cancer was not curable. He sent them home to think about it and return next week with their decision.

Mrs. Brown sat with her husband in the living room after dinner that night, and showed her husband the Five Wishes, Living Will. They looked through the sections and talked and cried together while they listened to each other say how scared they were about her dying. Mrs. Brown talked with her husband through each of the issues discussed in the Five Wishes. When they were finished, she sighed with relief. She looked at the document and what she had written about being on life-saving machines, having pain medication, whether she wanted to die at home, or in the hospital, and ideas she had been thinking about for her funeral. Now, it was all down on paper. Her husband knew exactly what she wanted. She had even put special requests on the document about wanting to start hospice so she could always be at home, and ideas about her funeral. Her husband understood and agreed with her wishes. The next week at their visit with her doctor they brought in a copy of the Five Wishes document and discussed it with him. His staff helped them arrange home hospice and made sure that her medical wishes were followed. Mrs. Brown died peacefully, at home, in the place she loved the most, with the people she loved around her.

What Is The Process?

You decide to determine, in writing, what medical treatment you want, and what treatment you want to refuse.

If you are taking high doses of pain medication, are on a ventilator or have severe psychiatric conditions that may affect your ability to make decision, your doctor may recommend that another physician or psychiatrist talk with you to make sure you understand your options, decisions and consequences of these decisions.

You will review with your physician or your healthcare agent, your diagnosis, your options, and your decisions, and document your choices on a CPR Directive, and/or Living Will.

You can assign a person as your healthcare agent to make medical decisions for you if you are not able to make them yourself. .

Make copies of all the documents, and keep them in a convenient place that is accessible to people who take care of you. Keep the original copy in a safe place, such as a safety deposit box, or file at home. Bring a new copy with you to the hospital, or medical center, each time you are admitted. They are added to the medical record, and may not be retrievable quickly enough, in an emergency. You may not get these copies back, since they become part of the hospital medical record. Keep a copy convenient in your home, and a BIG note in a place that emergency personnel would see, if needed.

What Will We Talk About?

You should talk with your physician and your healthcare agent about your attitudes, beliefs, religious beliefs, preferences, values and ethical ideas about your medical care, pain management goals, end of life issues, treatment decisions, your treatment environment, financial and funeral issues. This is valuable information for you to think about, and share with the person who will be making your healthcare decisions, as you create your advanced directives.

Review which of the advanced directive documents you need, or desire to prepare in advance. Complete the documents and have them signed by two witnesses (that are not involved in your care.)

Do not assume that people will know your wishes. Discuss your plan and as much of your value statements as you desire, with your family, so they understand your health goals and plan.

Do not make your decisions based on what you have viewed on television medical programs. The facts about resuscitation on TV entertainment programs are not real. In research about terminal or emergency situations seen on television, 67% of cardiac or respiratory arrests that were given CPR and resuscitated, completely recovered, and were able to go home. In reality, according to medical research, only 2-15% of cardiac arrests and resuscitations survive to be able to go home.

When Do I Need a Medical Power of Attorney?

Think carefully about whom you want to be making medical decisions for you. Family members love you, and may have difficulty understanding the medical outcomes or keeping to your wishes if they are fearful, distraught and grieving.

Your Medical Power of Attorney would make your medical decisions for you if you were unable to make these decisions yourself. Situations where this would occur could include: being unconscious, in a coma, or if pain medication or other medication was affecting your thinking and decision making (and this was documented by a physician or psychiatrist).

A Medical Power of Attorney cannot override you as long as you are medically competent.
Be assured that you have total control over this plan, and can revoke it at anytime. This can be done by destroying the document or writing your changes on paper. Remember to notify your physician and your healthcare agent about your changes.

When Does the Living Will/CPR Directive/DNR Order Take Effect?

Once a terminal illness is acknowledged and documented in your medical record by your physician, and the appropriate advanced directive forms are completed, and signed by witnesses.

Remember, that if your physician, healthcare provider, emergency room medical team, 911 emergency or safety personnel, homecare providers, or family and friends do not know these documents exist, they are obligated by law, to perform CPR if they are physically able to do this.

In the hospital a DNR order needs to be officially ordered on your chart from a physician. Even if you have a Living Will, it will be acknowledged, but it is not officially recognized as a physician’s order, until the physician writes it in your medical chart.

Be aware that if you arrive at an emergency room with a medically unrelated problem, than what is written in your advanced directive, the medical team will still provide you with the appropriate medical care.

If you need resuscitation, and your family disagrees with your advanced directives, they may instruct your physician to continue resuscitation efforts. Rarely, it does happen that the physician will comply with your family’s wishes.

Open the door… start the communication… use a tool that is comfortable for you, and legal in your state… discuss your wishes and your reasons… make sure you have the paperwork in a place where your family or emergency personnel can find it…
… Before the decision is not yours to make.

Resources and References

“The Five Wishes” by Aging with Dignity. www.agingwthdignity.com

AARP Bulletin: Where To Learn More About Advanced Directives.
www.aarp.org/bulletin/yourhealth/livingwill_enough.html
Annas, George R., “The Rights of Patients”
Consumers Tool Kit for Health Car Advance Planning by the Commission on Law and Aging.
www.abanet.org/aging/toolkit/
Colorado Advanced Directive: Planning for Important Healthcare Decisions.
Caring Connections. www.caringinfo.org
Colby, William H., “Unplugged: Reclaiming Our Right To Die In America”
Diem, MD, MPH, Susan J; Lantos, MD, John D; Tulsky, MD, James A; “Cardiopulmonary
Resuscitation on Television – Miracle and Misinformation. The New England Journal
Of Medicine. June 13, 1996. Vol 334:1578-1582.
Farber MD, Stuart; et al; “Withholding Resuscitation: A New Approach to Prehospital
End-of-Life Decisions”. Letter To The Editor: Annals of Internal Medicine.
Nov 21, 2006. Vol 145, Issue 10. Pg 788.
Fins, Dr. Joseph J., “A Palliative Ethic of Care: Clinical Wisdom at Life’s End”
GoWish Game/Decide What’s Important, Together. www.codaalliance.org
High PhD, Dallas M.; “Why are Elderly People Not Using Advanced Directives?”.
Journal of Aging and Health, 1993. Vol 5, No 4, 497-515.
Hoffman, Jan. “The Last Word on the Last Breath”. The New York Times, Oct 10, 2006.
Jewish Law – Halachic Living Will. www.jlaw.com/forms/
Kaufman, Sharon R., “And A Time To Die: How American Hospitals Shape the End of Life”
Phillips, RN, Wenger, NS, Teno J, Oye, Rk, et al; “Choices of seriously ill patients about
Cardiopulmonary resuscitation: correlates and outcomes. SUPPORT Investigators,
Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments.”
Am J Med. 1996 Feb; 100(2): 128-137
Sculier JP, Markiewicz E.; “Cardiopulmonary resuscitation in cancer patients: experience of an
Intensive care unit in a cancer center”. Bulletin Cancer, 1996 Aug; 83(8): 677-81.
The Values History. www.hospicefed.org/hospice_pages/values.htm
US Living Will Registry – Healthcare Proxy & Advance Directives.
www.uslivingwillregistry.com
Your Living Will on a Portable Drive – Essential Medical.
www.ess.med.com/mp_andyourlivingwill.php
Varon J, Fromm RE Jr; “In-hospital resuscitation among the elderly: substantial survival to
Hospital discharge”. Am J Emerg Med, 1996 Mar; 14(2): 130-2.

Important Terms to Understand:

Advanced Directives: Describes two legal documents:
Living Will – gives instructions about your wishes about your future medical care.
Medical Power of Attorney – assigns a designated healthcare agent to make medical
decisions for you if you are not able to make these decisions yourself.

CPR (Cardiopulmonary Resuscitation): a group of treatments used when a persons’ heart and/or breathing stops. It is used to restart the heartbeat and/or breathing. It is intended for sudden, unexpected heart attacks or severe respiratory distress. It can include chest compressions, breathing for the patient, electric shocks to the heart and medications.

CPR Directive: a Do Not Resuscitate order from a physician written for individuals who are at home and do not want to receive CPR in case of an emergency at home if their heart or breathing stops.

DNR (Do Not resuscitate): a medical order, used in a hospital, rehab center, or nursing home. It is written by a physician, and instructs healthcare providers not to do CPR if your heart or breathing stops. DNR can be considered as, “allowing a natural death”. It is NOT euthanasia.
It may be as simple as:
No CPR, No cardiac compressions, No ventilator.

Or, it may also be very complex, including options of:
No compressions, No cardiac medications, No ventilator
No blood products, No antibiotics, No nutrition

Even if you decide on a DNR order, you will be given appropriate medical treatment
other than CPR.

A patient or family member may be told they have the option to pick one, some, or all of
these options. Patients and/or families often do not understand that to do only one or two
of these options may not work because they do not work alone, but only when done all
together. For example, giving cardiac medications, without cardiac compressions and
oxygen/ventilation, may not be successful in restarting a stopped heartbeat, because the
medications are not being circulated.

Living Will: a type of advanced directive. Also called, “directive to physicians”, “medical directive”. This document describes the kind of care you decided you do or do not want, in the event your healthcare agent has to make these decisions for you. A Living Will only applies if you have a terminal illness.

6/3/2007 Friedman Certified Legal Nurse Consultants * Tel 720-535-9598 * www.FriedmanCLNC.com
Copyright January 2008. All rights reserved. No copy or distribution without consent of author