Jan 17

Hospice Care

by Maurika Wells

Decisions about end-of-life care are deeply personal, and are based on your values and beliefs. Talking with your loved ones, health care providers and peers are important steps toward knowing what you want.

It can be difficult to initiate these conversations, however, they can be invaluable to those you love and those providing medical care. Remember, the first step is taking the time to consider what you are going to say.

More and more, the way we plan for end of life is being compared to how we plan for birthing. It wasn’t too long ago that women were sedated when they went into labor and unable to experience the birthing process. This, of course, has changed dramatically. Birthing plans can vary from epidurals, Caesarean sections and intrathecals to natural births, whether in the hospital, at home, etc. The point is that women and their families have reclaimed this incredibly personal decision by advocating for themselves.

Similarly, when considering end of life there are many options to consider. If you are like most people, you don’t think about what your death will look like. Maybe you are secretly hoping that you won’t have to plan for this. Yet just as sure as most pregnancies will create life, all life will encompass death – whether you have planned for it or not.

Perhaps the first step is to simply recognize that death is intrinsic to our lives and to learn to embrace it instead of turning away. This first step will encompass changing our social norms around death and dying. For now, let’s focus on what we mean by planning for our death.

Of course, it is impossible to foresee every possibility. We cannot know the exact circumstances surrounding our death. However, these are some aspects that we can start to think about and plan for now.

How awake or lucid do you want to be? Alertness may come with increased pain or other symptoms. Be aware that you can balance these in a manner that is very personal and may change over time.

How much pain are you comfortable bearing? Pain can come in many types and levels. Some discomfort may be bearable or may be a lot. Importantly you get to decide this just as women get to decide if they would like pain relief during labor. It is up to you.

Do you want to be asleep when you die? It is possible to be sedated at end of life. This is called terminal sedation. Sometimes it is a choice of the individual. Sometimes, when one cannot choose on their own, it becomes the family’s choice if they witness agitation and are worried about suffering.

What symptoms are unbearable to you? Some people are OK with some pain, but are not OK with nausea, or vice versa. Our bodies may experience a volume of symptoms at end of life, just as they do our entire lives. Consider what is reasonable to you. 

Can you define a peaceful death? Have you seen or heard of a peaceful death? What defined that for you? Perhaps you would like to experience something similar. Are there ceremonies or traditions that you would like to incorporate?

Do you have unfinished business? Are there any people who might not handle your death well and can you talk to them about it? Perhaps you have people you would like to thank, apologize too, or express your love.

How will your spirituality and/or religious beliefs play into your wishes at end of life? Many believe that dying is a spiritual event with medical mplications. Have you thought about what this will mean to you? Often it is our beliefs that bring us comfort and peace. Have you considered what will happen after you die? Maybe, you don’t want to wait to think about this.

Have you tackled the legal health care pieces that will come up at end of life? This includes advance directives, POLST, DNR, Five Wishes and durable power of attorney to name a few. These are important because they not only provide your voice in a legal way, but they also relieve your family of deciding for you. 

It is common to hear people say they assume they will die a sudden death, such as in a car accident. While this is a possibility, only about 6 percent of the population dies this way. So although it may seem dark and possibly frightening, take the time to consider what is meaningful to you and to your family at end of life. Talk honestly and openly with those who love and support you. Be an advocate for what you want, knowing you are provided many choices to suit your own uniqueness.

Maurika Wells is administrator of Hospice of Missoula. Questions for Life’s End may be submitted to maurikaw@hospiceofmissoula.com.

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