End of Life Issues

End of Life Issues - Photo by ariadna

Most of the posts in my Fit Tips 4 Life blog include quite a few articles from evidence-based sources. For this article, I will lean heavily on my own experience as a bone marrow transplant nurse for nearly 18 years and my more recent experience as a Faith Community Nurse as well as personal experiences of family and friends.

One of my friends posted a message on Facebook about a highly publicized case in which a woman who was diagnosed with a terminal illness chose to end her own life. My friend's post asked friends to give their own opinions about that choice, and it generated quite a bit of meaningful, helpful, and lively conversation. I'd like to share some points that stemmed from that conversation regarding end of life issues.

Consider Talking About Your Wishes

The conversation might seem a bit awkward, but talking with loved ones about what medical procedures you would or would not want to have done if you cannot make decisions for yourself is a good idea. Many family members of patients who become unable to make medical decisions do not know what treatments that person would have chosen. Family members who are uncertain may choose more aggressive treatments due to that uncertainty factor, and sometimes those who are making a decision have a hard time coming to an agreement, particularly if those wishes are unknown.

Many of my cancer patients mentioned that they would be okay with dying and mentioned that they were seeking aggressive treatment more out of concern for loved ones rather than themselves. If you have strong feelings about the matter and voice those thoughts to others, it might make the decision-making process a bit clearer. I'm not saying any decisions about end of life are easy, but information learned from that conversation might help and perhaps give that person peace regarding decisions made.

Consider Putting Your Wishes in Writing

A living will is a legal document that specifies one's wishes if he or she is unable to make medical decisions for him or herself. Different states may have slightly different forms, but if you are traveling and carry your living will with you into other states, they typically honor that document in other states as well. Living will forms have changed over the years with additions of more specific information. Check to ensure that the form you have is the latest version to avoid some loopholes that might exist in previous versions. Keep the original form in a safe place where someone else is aware of its location.

This document should be available to one's healthcare team and anyone you have designated to make decisions for you in the event that you cannot make decisions for yourself. Your primary care physician and specialists should have a current copy of your living will. In order for those wishes to be carried out, a doctor will still need to write an order regarding life-sustaining treatments in order for the staff to carry out those wishes. It is a good idea to review your living will once a year and date and initial that you still agree with the existing one.

You may wish to complete a living will to make your wishes known; however, you have the right to change the living will or to do away with it if you change your mind. If you decide to revise your living will, you should collect all copies of the previous one and destroy them. This document may specify treatments that you might not have considered, so it might be helpful to look at a living will document even if you do not wish to complete one so that you can speak with loved ones about specific information regarding your wishes.

Another document you might wish to consider completing is a healthcare power of attorney. In the event that you cannot make medical decisions for yourself, the healthcare team will typically ask your legal next of kin to make decisions for you. If you do not feel your legal next of kin would be the best person(s) to make decisions for you, a healthcare power of attorney might be a good choice. Note that if your legal next of kin is more than one person, those people generally must come to an agreement regarding care choices.

Some choose to complete additional paperwork, such as a mental health power of attorney. In addition, people may choose to complete a last will and testament and make many additional arrangements, such as pre-planning a funeral, life celebration, burial, cremation, plans for a pet, etc. Some people choose to write their own obituaries in advance. Ensure that the appropriate people will have access to these documents when needed.

Some people have a deep mistrust of the healthcare system and are afraid to complete any written documents for fear that appropriate care will be withheld. Nobody should be forced to complete these forms. I have a glimpse of those deep scars and understand why some choose not to put end of life issues in writing. I apologize to you if you or someone you love was wronged by our healthcare system – I always tried to provide the very best care to every one of my patients, but I know that our healthcare system is far from perfect or even altruistic in many ways.

The Caregiver Side

End of life issues affect caregivers, especially if the caregiver is a family member or close friend. Several comments in that Facebook discussion were words of affirmation for people who care for a family member who is chronically or terminally ill. Those small, seemingly insignificant caregiver acts might seem huge to the recipients of care.

I would encourage friends and other family members of those caregivers to offer specific help if possible and to provide encouraging words on a regular basis. Many caregivers struggle with burnout and extreme fatigue; many times insurance will not cover the cost of needed home care. A break for a few hours or even a heartfelt, kind word of encouragement might help tremendously.

The grief of loss often begins before a loved one dies, particularly if the illness is lengthy and progressive. Grief has a myriad of different stages, such as anger, bargaining, depression, acceptance, etc. A person might stay in one stage for a long time or might move through several different stages quickly. People can return to a previous stage years later. Many may feel guilty that someone for whom they cared died.

Caregivers may be surrounded by friends and family immediately after the death of a loved one, but the support often quickly fades. Continuing to offer moral support and specific help can go a long way to help that caregiver heal. Many caregivers feel guilty regarding the person's death; it takes time to work through those feelings.

To Speak or Not to Speak

In an effort to help, some people say things that may be quite hurtful to someone who is grieving a loss. If in doubt, it is best not to say it. Simply being there is often a welcome gift. Listen in a loving, kind, caring way. Offer a hug if appropriate, and keep holding on until she is ready to let go. If the person has a religious faith, ask what scripture passages bring peace to him and offer to read that passage if desired. If he would like for you to pray, a simple, heartfelt prayer may be helpful.

Avoid saying things to try to make it all better – you cannot make it all better. Loss hurts. Tears can help one to heal. Grief is a process that takes time. Sometimes a long time. Be willing to visit on a regular basis in the months after a loss when the grief really sinks in. Let the other person talk and simply listen. It might not seem like it at the time, but you are helping when you keep your mouth shut. Maintain confidentiality – assume that what that person says is meant only for your ears unless the person specifically mentions that he would like for you to share that information with others.

Fancy Isn't Necessary

Offering to help in a simple, tangible way may also be well received. Washing the clothes, cleaning the toilets, dusting the furniture, writing thank-you notes, mowing the yard, or taking the dog for a walk might seem less than exciting, but a caring act does not have to be exciting to be meaningful. Avoid mentioning those good deeds to others – doing kind acts incognito can help build trust.

Working with numerous cancer patients put me in a unique position in which I have learned to appreciate things that I did not even realize I took for granted. Even though I often used state-of-the-art equipment, I never forgot that I was caring for unique human beings who deserved my respect and the best holistic care that I could provide. My care included not only the one in the bed but also those who grieved beside the bed. No two patients were exactly alike; I learned to assess needs and respond accordingly. Grief is the same way, ever evolving. We can look for changes and adjust as needed.

A Cane and a Casket

In some cultures, a relative sits by the casket and leans on a cane, symbolizing how much he leaned on the loved one now gone and how he now needs support. May we all find someone on whom we can lean when times are tough.