Advance care planning and cancer: What you should consider

Advance directives, also known as advance care planning, are your wishes for the medical care you receive during the last days of your life. They are the instructions you give your family, so they know what your end-of-life preferences are if you aren’t able to speak for yourself.

An advance directive is more thorough than a living will. A complete advance directive consists of three documents:

  1. Physician orders for life-sustaining treatment (POLST) form – this documents whether or not you would like cardiopulmonary resuscitation (CPR) performed if your heart suddenly stop beating. There are multiple options to choose from for when and how CPR can be performed. This document has to be signed by a physician for it to be legal.
  2. Power of attorney for health care form – this is where you appoint one person to talk to the doctors and make medical decisions for you. You choose if this person can make your medical decisions starting now or only when you cannot speak for yourself. You also can put limitations on this person and say when they may have access to your medical records.
  3. Discussion record – this form helps you write out your specific medical wishes for the end of your life. It is meant to serve as a detailed guide for your loved ones, so they know what decisions to make on your behalf. It lists specific treatments and medical interventions you would or would not want during the final days of your life, including pain management. It addresses both expected and unexpected situations and allows you to voice any spiritual and emotional support you would prefer.

Why it’s important

Advance care planning is important because we never know when a situation might arise when we need someone to make medical decisions. The person who has to make those decisions will feel more confident and comfortable doing so if your preferences are clearly laid out. It also reduces anxiety and stress within the family if everyone knows whose role it is to speak to the doctors on your behalf. Also, without a legal document to back up your wishes, there is no way to guarantee that your preferences will be known or followed.

I always give my patients three tips when choosing who to name in their power of attorney for health care form:

  1. Choose someone who is not your financial power of attorney. These two roles naturally have a conflict of interest.
  2. Choose someone who is healthier than you and who is expected to live longer than you.
  3. Choose someone who will make decisions consistent with your wishes, without regard for their own beliefs or fears.

How a cancer diagnosis is different

Cancer is unique to other diseases because it has so many forms, can appear in any body system and has such a wide variety of treatments. It can range in severity and stage, and everyone has a unique journey with it. Also, cancer affects every part of a person’s life, not just their health. It influences their family relationships, financial status, employment, emotional coping and spiritual life.

hand over hand

When they hear they have been diagnosed with cancer, many people first think, “Am I going to die?” Currently, the medical community is developing new and more effective cancer treatments at an unprecedented rate. More people are living longer and with better quality lives after a cancer diagnosis than ever before. However, completing advance care planning early in the cancer journey is still as important as ever.

First, the cancer patient often goes through various treatments that affect the patient’s health differently. Some of these treatments put the patient at increased risk for adverse health events. The patient’s health can rapidly change day to day, and it is impossible to know how they will respond to treatment or how their cancer will improve or progress.

Second, the cancer journey is often unexpected and scary. It is an emotional comfort to the patient and their family to know that their wishes are clearly written out if the patient’s condition changes. It allows the family to focus more on caring for their loved one than worrying about making the right decision. It also decreases the guilt that can sometimes happen when the family has to make a decision they are unsure about.

Having a plan

I feel everyone should strongly consider completing an advanced care plan regardless of diagnosis. Some cancers tend to progress more rapidly, be less responsive to treatment or have a poorer prognosis (effect on life expectancy) than other cancers. In these cases, completing an advance directive as soon as possible after the diagnosis is imperative.

Let us help you get started.

Advance Care Planning| OSF HealthCare.

Often, families don’t want to focus on negative things, like preparing for death, so some families choose not to talk about it. However, when the time comes that a family member is approaching death, those families often don’t know what decisions to make for their loved ones. The advance care planning process allows a safe place to have these discussions and be genuine with your family about your beliefs surrounding the dying process. The person facilitating the discussion is specially trained to help “break the ice” in talking about death in a realistic way. This helps to normalize the discussion so that it is easier to talk about within your family unit.

Advance care directives should be reviewed and updated regularly. Life circumstances and health conditions change all the time. We recommend reviewing your advance directive at least once a year to make sure that nothing has changed. It also should be reviewed during or after any major life event, such as getting married or a death in the family. Just know that updating it will require it to be witnessed with an updated signature and date.

About Author: Catherine Bailey

Catherine Bailey, RN, BSN, became a nurse in 2007 and spent the last 10 years working in oncology. She moved into the role of lung cancer navigator in 2016 and found it both humbling and uplifting to walk with patients through their cancer journey.
Catherine became passionate about advance care planning after seeing many patients and families struggle at the end of life without a plan in place. She is currently working on an IRB-approved research study on the benefits of advance care planning in the lung cancer population.

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Categories: Cancer