According to the Merriam-Webster Dictionary, advocacy is defined as “the act or process of advocating or supporting a cause”. I believe that our seniors very much need advocacy when interacting with our healthcare system. Even an office visit to their primary care physician, can be more beneficial to the information conveyed to the physician and from the physician for the senior to take home and follow through with. There is a phenomenon called “white coat syndrome” which means an increased level of stress on the individual seeing the doctor usually reflected in a higher than usual blood pressure. I think seniors also tend to have a stress affect in which they cannot remember all the information told by the doctor. I have also seen many a visit in which the senior tells the doctor how well everything is going and forgets to make the doctor aware of recent occurrences like falls or fainting or dizziness. For this reason, I believe that with each healthcare occurrence it is beneficial to the effectiveness of the encounter to have someone with that older person to be their eyes and ears and to remind them of the things they wanted to tell the physician.
With the average face to face visit with physicians being in the 14 minute range, very few seniors will bring up concerns or issues that trouble them without some prompting of the “advocate”. The advocate could be a spouse, son or daughter, caregiver or grandchild. It is also time better spent if a short list of the senior’s concerns or questions is drafted ahead of time and brought to the appointment. This same individual can take some notes and help remember the post-appointment information such as dosage changes and follow-up. I believe 14 minute appointments are often a disservice to everyone. I think physicians feel they have scratched the surface and not taken the time and patients often feel the doctor does not have the time for their needs. Sometimes I long for “the good old days”. Additional issues can be hearing impairment such that the senior does not hear large portions of the conversation, but does not let on. So, without advocacy the appointment may have become a waste of time for all concerned.
As I grow older and think about my own health and well being and the inevitable and eventual decline, I think about what I want for care and services and how I want to live. Most data shows that nurses and doctors are more reality oriented when it comes to their own desires and options in their later years. Perhaps it is because they have seen so much over the years.
The brutal reality is that most seniors have not made decisions ahead of their healthcare need and talked about it with their physician and loved ones. The other reality is that too many seniors end up spending their last days in the hospital with extensive and often very uncomfortable treatments and procedures that offer no hope of a better life. These same individuals often die an uncomfortable death in a strange hospital environment rather than at home in their own bed. Five percent of Medicare patients who die each year consume a third of the Medicare dollars in their final month of life when there was no reasonable chance for them to recover. I believe that is because we do not like to talk about the possibility and inevitability of death.
I propose that all seniors when they sign up for Medicare consider what they want in their coming decade or two of life. Each visit to their primary doctor should include at least a mini discussion of what their healthcare future looks like and what complications could interfere with it. Most American seniors have at least one chronic illness. As the chronic illnesses are acquired, we have to take a more measured look at the consequences of our decisions today.
Each time an older person is sent to the Emergency Room we need to recognize that unless we advocate and speak up for the decisions we want, we may lose some of the choices that we really care about. A large part of that focus is to remember that we always have options and choices and the ER physician should be making us aware of those options.
In our financially driven and hurry up world, many times our primary physician does not make the time to have an in-depth discussion with us regarding our thoughts and theirs about our future. As consumers and patients of the medical system, we owe it to ourselves and to our families to have that discussion with our physician no matter how reluctant either of us are.
So, with the New Year upon us, I ask you to think about it.
Life is full of choices. In looking at the choices of the senior generation, the number of things we must choose can be downright daunting. We should grow accustomed to the concept of making choices in the long course of our lives, but for some of us that never gets any easier. One consideration may be when should I retire? Can I afford to retire or should I drop back to part time employment. Right about age 50, we usually receive an invitation to become involved in AARP. It seems ironic that we receive that notice and yet for most of us retirement is still many years away. We often do not choose to think of ourselves as belonging to that “aging club” yet. We might be lured by the benefits in the way of discounts and deals. Hopefully, most of those choices are not made for us through layoffs and closures during these volatile economic times.
However, some choices we can initiate ahead of time are plans for our future aging in the way of health care, retirement savings, living expenses and the potential for physical decline. Many people in our health-conscious and death-denying culture like to think we will live forever. We don’t like to make choices ahead of the need for them. One important one that comes to mind is having a will. The rationale for having one is easy. The will determines whom we want to oversee and receive our worldly belongings after we die. It designates who is in charge of determining and dispersing our estate and does not necessitate a lawyer to be a legal document.
Another big one for me is a “living will”. It is called many things but basically it says what we want if still alive and unable to speak for oneself. So, basically it is directions for what you want for emergency care and potentially end of life care should that situation befall you. I am a little amused at how difficult that is for people to face. We don’t seem to flinch at all at making the choice to be “donors” should a catastrophic event occur. That seems to be quite concrete and not an agonizing prolonged decision. In fact, most of us automatically check the box at the DMV or in the license renewal paperwork. Yet the decision to state what our wishes are for our end of life care seems somehow very formidable. Occasionally I meet with people who are very clear and direct at how and what they want for their personal care at that time of life. I often wonder what in their lives sets them apart to be so decisive about those particular important decisions.
Another consideration is doing the work of communicating with one’s family doctor on what we want and how we want them to take care of us. That usually begins well in advance of our end of lifetime, yet should be on the radar for both the senior and the physician. If your doctor does not want to have that conversation or does not seem to have your best interests at heart, perhaps you should reconsider your options.
In her book The Etiquette of Illness Susan Halpern asserts, “to dare to talk about the end of life issues usually enhances the relationship of the listener and talker and allows each to live more fully until death comes.” She is talking about when illness has occurred and is advanced but the concept of open communication is appealing and rewarding.
As November, National Hospice Month, rolls around and we gather to give thanks for whatever in our lives we are personally thankful for, why not take this time to consider some of the important things that might be necessary in our near future and help those of us left to care for our needs. These decisions, just like donor donation are not set in stone and can be changed at any time, but even just thinking about them helps us to be reminded of our mortality. Putting this information on paper is the first step, the second one is just as important. We need to discuss the decisions with the ones we love and especially the ones who are left to carry it all out.
If you ask a hospice nurse or many nurses in the acute care setting about their view of death, they generally don’t miss a beat in stating, “don’t ever let that happen to me”. We have all seen the deaths that were prevented or the prolonged high tech deaths that are so agonizing for everyone. But since none of us has a crystal ball to give us future information of how and when we will die, we must rely on what information we have about our own health and plan for what might lie ahead. Personally, I am a strong believer in quality of life rather than quantity of life. Seven years ago when my 90 year old mother could not answer the question of what her wishes might be should the end be near. Her answer was “if I could have quality then I would want to live, but you and your sister should decide”. That was NOT the answer I was hoping for. My siblings and I considered ourselves fortunate when fate dealt mom its blow. She suffered a massive hemorrhagic stroke and did not remain conscious. We had time to gather and say good-bye and keep her comfortable for the short time she had still barely breathing on her own. We were all granted our one wish of a non-agonizing prolonged death for the mother we revered.
I just finished a very fascinating book. At End of Life: True Stories About How We Die is a compilation of stories by twenty-two essayists who chose to write about their experience both to share that experience and to heal from documenting their feelings and their losses. Some deaths were anticipated and peaceful and embraced by the writer as are many hospice patient deaths. Others were horrific and not only difficult to observe but tragic to resolve and recover from when it was all over.
One recurring theme in many of the essays is how many decisions needed to be made at end of life or in preparation for the end. Many questions and self-doubts about the decisions were expressed. Am I doing the right thing? Is this really what she wanted? How will I manage? Can I cope with this? Am I expecting too much – doing too much? Am I giving up on him?
By the time I turned the last page of this book, it became apparent to me once again in my long career as a hospice nurse of how important it is for all of us to listen to the dying. But it is even more important to listen and plan before the crisis and before the urgency and the need is at hand.
Each of us brings our own feelings and beliefs to our end of life experience whether a nurse, social worker, chaplain, aide or physician. These beliefs are formed by the personal life experiences, culture, religion or lack of. They are also influenced by our career experiences in healthcare or end of life care. The one thing we invariably have in common is the belief that a life prolonged is not always the preferred choice.
So as you gather with family members to celebrate Thanksgiving and a month later Christmas, consider what you would want. Ask your parents and your spouse what they would want for choices and care. Discuss it as a family and as a choice for all to be aware of. That way when the sudden diagnosis or situation happens, there are no questions, no guilt, no blaming for the choices to be made. The hospice families that have the easiest time and the best life experience with the death are the ones who planned ahead and talked about it openly. When the talking about it has happened, please document the information. The best way to do this is in the form of a living will or advanced health care directive. These are legal documents that do not require a lawyer and clearly state the signer’s wishes.