Planning for the End of Life: Approaching End-of-Life Advanced Directives with Family Members
This MontGuide is designed to help family members discuss the topic of end-of-life care and explains potential Montana options for advanced directives.
Last Updated: 03/17by Sandra J. Bailey, Ph.D., CFLE, Family & Human Development
RARELY DO PEOPLE WANT TO TALK ABOUT DEATH
and dying. Most of us do not want to think about decisions to be made when a loved one is dying. We may believe our loved ones are aware of our choices if a decision needs to be made near the end of our lives. The reality is that making decisions about our care and needs can be stressful for surviving family members.
While in the hospital, doctors ask questions such as:
- Do you want us to resuscitate your mother (who has advanced cancer) if she stops breathing?
- Your grandfather is in the late stages of Alzheimer’s disease and contracted an infection. Do you want us to order an antibiotic?
Research has found that relatives of patients who are near end of life and have made advanced plans, had fewer concerns about their doctor's communication. They were also better prepared for the patient’s death.
Montana is a state with an aging population. In 2016, nearly 17.2 percent of Montanans were age 65 and older. Nationally, the average is 14.5 percent. Some of the very rural eastern counties have even higher numbers of older adults. In Daniels County, nearly 25 percent of the population is aged 65 or older, while in Garfield County almost 23 percent of the population is aged 65 and over. Planning for the end of life is more important than ever for Montanans.
Today we are living longer than past generations. In addition, medical technology extends our lives when we become seriously ill. More people today die of chronic illnesses, such as cancer, than acute diseases like the flu. Patients and their families are often faced with a myriad of choices for treatment. Many now believe that patient and physician advanced planning are part of the total care for the end of life for the patient.
Advanced Directives and POLST
In the early 1970s, people began to show more interest in advanced directives and living wills. Advanced directives and living wills are written statements of an individual’s wishes regarding medical treatment, made to ensure those wishes are honored if he or she is not able to express them because of incapacitation. The idea was to help terminally ill patients relieve their loved ones from the burdens of making tough end-of-life decisions.
One such advanced directive, Five Wishes, was introduced in 1997. In Montana, Five Wishes meets the legal requirements for an advanced directive. Information about obtaining a packet on Five Wishes can be obtained through www.agingwithdignity.org.
In 1991, the Montana Legislature passed the Montana Rights of the Terminally Ill Act, assuring Montanans the right to complete a declaration, another name for an advanced directive. This act allows Montanans the right to withhold or withdraw life-sustaining treatment when an individual has a terminal health condition. More information on this act is available in the MSU Extension MontGuide Montana Rights of the Terminally Ill Act (MT199202HR).
A new document available to Montanans is called POLST (Provider Orders for Life-Sustaining Treatment). The difference between a declaration and POLST is that POLST is a medical order that must be honored by all Montana health care providers. POLST becomes part of your medical record and must be signed by you and your physician, nurse practitioner, or physician assistant. More information about this act is available in the MontGuide Provider Orders for Life-Sustaining Treatment (MT201112HR).
How do we begin the discussion regarding the end of life?
Starting a discussion with your loved one about end-of-life care can be challenging. Following are some possible openings for adults with aging parents:
- I know you are in good health now, Mother, but I worry about you becoming seriously ill and unable to make those decisions for yourself. I would feel much better knowing what your wishes are. Could we talk about this?
- I just learned of a new document called POLST (Provider Orders for Life-Sustaining Treatment). It helps people plan for the types of treatment they want should they be close to the end of their lives. Would you be willing to read this fact sheet about POLST from Montana State University Extension?
- Dad, I appreciate how you and Mother have your will and insurance policies in order. One more document I wish you would consider is an advanced directive/declaration. This is a document that you complete with your doctor. It explains what your wishes are, should you become terminally ill. MSU Extension has a fact sheet about a declaration. May I leave a copy with you?
- I learned after reading an article that people are living a lot longer today than in the past and that most people die of chronic illness. Because of this, it is more important than ever that loved ones know what a person would want to have happen if he became too ill to make decisions. I would like to talk about with you. When would be a good time to discuss this?
Bringing up the topic of planning for the end of life and then setting a time to discuss it gives your loved one(s) time to think about the issue. Family members can then research the topics of advanced directives to be better informed when the discussion takes place. Family members may also be less resistant to the discussion if the issue is brought up in one conversation and then a later date is set to talk about it.
Approaching a Resistant Loved One
Research finds that survivors whose loved ones have completed advance directives report less stress and depression after the passing of the family member because they know their loved one's wishes were honored. Families were also more at ease with the death and dying experience. If your loved one is resistant, you may need to be more persistent. The following are some suggestions for conversation openers to address the topic:
- Dad, I know it isn’t pleasant to talk about dying and you are in good health but we really do need to plan now, while we have the opportunity. I will leave this information about Montana living wills with you and on Thursday when we have lunch I would like to talk more about it.
- Mother, please consider my view on this topic. I need to know what your wishes are should you not be able to make your own medical decisions. I know you wouldn’t want me to go through the stress and discomfort of making the decisions for you. We need to discuss this. I will come over on Wednesday evening and we can discuss advanced directives.
Approaching Resistant Family Members
Resistance may also come from siblings or other family members. They may not want to “upset” or “disturb” the older person with discussions about dying or they may not want to deal with the idea of a loved one's death themselves. There are two approaches you may wish to consider.
One strategy would be to call a family meeting. Be sure to include the family member whom you hope will complete an advanced directive. Find a comfortable setting where everyone involved can feel free to express his or her views.
Sometimes family meetings are too formal. Meeting individually with a family member is another strategy, especially if he or she is frightened by the topic of death. Ask the individual to have coffee or lunch to discuss your concerns about your aging family member. You could approach the topic by stating:
- I remember Mom worrying about lingering on life support after her mother (our grandmother) was resuscitated during her long bout with cancer. She always told me she didn’t want to be a burden on us when it was her time to go. There are several advance directives including a new one called POLST. I would like your help explaining these to Mom so that the same thing that happened to grandmother won’t happen to her. Would you be willing to do this with me?
If the strategies mentioned thus far to approach the topic of death and dying don’t work, consider enlisting the help of the family doctor, medical social worker, or spiritual advisor. Engaging an impartial third person to facilitate the conversation can help remove the emotion and keep the discussion on track.
Expressing Appreciation
Regardless of whether or not your loved one was willing to talk about end-of-life care, be sure to express your appreciation for the effort. Let your loved one know that you hope he or she will be around for a long time.
- Dad, I know reading about POLST was very difficult and emotional for you. I had a hard time bringing up the topic. Please know that I really appreciate your decision to meet with your doctor and complete the POLST form. I would have agonized over what to do if it had been left up to me.
- Mom, we hope you are around for a long time! By reading about POLST and filling out the form with your doctor, we won’t have to worry about how to handle these tough decisions when the time comes. Our discussion prompted me to complete my own advanced directive.
The appreciation can be affirming for the loved one as he or she knows that the planning will help the family. All family members may be relieved to know that decisions regarding end-of-life care are in place.
Although you may want your loved one to complete an advanced directive or POLST, the decision must be left up to the individual. If your loved one does not want to pursue the topic, then all you can do is honor his or her decision. He or she may think family members are rushing the topic of death and may be more willing to start the discussion at a later date.
Where Do We Start?
Once the discussion has taken place, your loved one will need to make a decision as to whether or not he or she wants to complete an advanced directive and/or POLST. Advanced directives such as Five Wishes can be completed by the individual and the signature witnessed by two people 18 years of age or older. In Montana, Five Wishes does not need to be notarized. With the form comes a card to carry in your wallet. You should also let your loved ones know where they can find a copy of the completed form.
If your family member elects to use POLST, he or she will need to make an appointment with his/her physician, nurse practitioner, or physician assistant to complete the POLST form. Ask your loved one if you could accompany him or her to the appointment with the healthcare provider. Once POLST is in place, keep the bright green original in a place where family members can easily access it. Copies should be kept with medical records. You can also order POLST bracelets so that emergency personnel can easily see that POLST is in place. For more information and the POLST form, see the MontGuide POLST (MT201112HR).
Maintaining a Record of Your Information
The Montana Attorney General's office has designed a website to house the End-of-Life Registry for Montana, https://app.mt.gov/registry/. By completing a form, your advance directive or POLST can be put into the state registry. Your directive will be reviewed to see if it meets Montana’s legal requirements prior to being accepted. For more information on the End-of-Life Registry, see the MontGuide Montana's End-of-Life Registry (MT200602HR).
Conclusion
We are fortunate in the 21st century to have better healthcare and technology to help us live longer lives. However, death is part of the circle of life. In addition to writing wills and planning for property transfers after death, plans are needed for the dying process. Making plans can help the individual feel more secure about the end-of-life decision. Family members will not be making tough decisions alone when a loved one is facing death.
References
Five Wishes. Aging with Dignity. http://agingwithdignity.org/five-wishes.php
Janssen, D. J., Engelberg, R. A., Wouters, E. F., & Curtis, J. R. (2012). Advance care planning for patients with COPD: Past, present and future. Patient Education and Counseling 86. 19–24.
Montana State Plan on Aging 2011-2015. Retrieved from: http://dphhs.mt.gov/Portals/85/sltc/documents/AgingReports/StatePlanFinal2011.pdf
Sabatino, C. (2010). The evolution of health care advance planning law and policy, The Milbank Quarterly, 88(2), 211-239
US Census Bureau: State & County Quick Facts. http://www.census.gov/quickfacts/table/PST045216/30