Preparing for End of Life and DeathNovember 28, 2019 | Caregiver Compensation, Caregiver Stories, Long-term Care, Nevada Caregiver Coalition
End of life is inevitable. We all die, whether it is expected or not. When we prepare for our own death in advance, we are able to relieve the decision-making burden on those whom we love and create the opportunity for end of life and death that maintains self-control. If you are reading these words, the day will come when you will die, perhaps “pass on” depending on your spiritual beliefs, but let us use the word death, because that is what it is. Usually death comes expectedly, at the end of a long, well-lived life or at the end of a terminal illness. But, on occasion, death arrives without warning. Accidents, sudden illness, even becoming the victim of a crime can cause you to die without notice, without time to plan. Therefore, do not be caught unprepared. Your take home message here is to plan your death!
How do we plan for end of life and death? First, give someone close to you the durable power of attorney to manage your affairs if you become sick and unable to do for yourself. Who is going to pay your bills, deposit your checks and manage your financial affairs? Second, write a will and communicate this information to those involved, including family and friends. Third, write an advanced-care directive or living will, and give someone medical power of attorney to carry out your wishes about medical treatment at the end of your life if you cannot. Finally, ease the trauma of your death for survivors by preplanning your funeral or service. My mother spelled out exactly what, who, and where she wanted her service, down to the hymns to sing. It made it so easy for us children. In summary, plan!
Experts explain the steps you should take to make sure your family knows your wishes on everything from funeral plans to end-of-life care. The important thing is to start planning sooner rather than later. Only one-third of us have plans like our advance directives and only one-third of those are used. Why? We do not talk about “death” and our end of life wishes. We may fill out the legal form but we file it away somewhere. So, not only do we need to do our own planning through Advance Directives, Durable Power of Attorney, Living Will, POLST (Physician Order of Life Sustaining Treatment), and Five Wishes, but we have to discuss it with our family and friends.
We especially need to discuss your wishes and desired medical treatment at end of life; since we may not be able to make our own decisions. Physicians, EMTs, and other acute care health professionals are trained to provide all means of life sustaining treatment regardless of the outcome. In addition, I have seen many fights and disagreements among family about what Mom or Dad needs for medical care because their parents had never had the discussion with the family about what their wishes were for end of life care. In short, we need to fill out the legal forms and discuss them fully with our loved ones.
There are many benefits to having a discussion about end of life and death. Awareness of your personal choices regarding end of life arrangements gives you and your loved ones a better perspective. By taking the time to discuss your wishes in advance, your loved ones will not need to make difficult choices for you in a time of crisis, when emotions cloud our decision-making abilities. Having the talk with your loved ones can also save you money if you choose to not receive major medical care. Additionally, many families find that sharing their wishes with their loved ones actually strengthens their relationships and brings peace of mind. Something we all strive for.
Recently, the federal Medicare program instituted funding for physicians to receive reimbursement for providing information and discussion about Advanced Directives; which is really a good move. Unfortunately, it only covers information and a discussion. It does not actually include help in filling out the legal documents. They could provide the POLST if the person was close to death, but all other Medicare recipients need to do the planning and develop the legal documents. A website “theROYL.com” (ROYL = Rest Of Your Life), which I helped create, provides information about what legal forms are needed and what needs to be discussed. Clearly, our professional educational institutions need to incorporate better education and techniques for the communication and creation of the documents for the Advance Directives. In addition, since people turn to their friends and family before professionals, public education has to be addressed.
In a survey on end of life that I crafted several years ago, we found that Nevadans have taken some significant steps toward improving care at end of life. This statewide survey indicated that the Nevada’s public perception and practice of advance planning, as well as palliative care and pain management, are above some national averages. These measures still have a long way to go to fulfill the many issues facing us at end of life. One-third of Nevadans have advance directives, higher than the national average, but clearly more need to have their wishes known and enforced. Pain management and palliative care were generally well handled by our health care professionals, but one-fourth still needed significant intervention to have a good death. People perceived hospice care much better than traditional health care for pain management, concerns about the illness, and symptom management. Our public policy makers and health care professionals need to pay attention to these public perceptions and experiences of end of life care. By doing so, perhaps we all can benefit by improving the quality of life, even at the end which will “add life to years”.
For more tips on planning for end of life, please visit washoecaregivers.org.
Dr. Larry Weiss
Center for Healthy Aging