Making a list for the inevitable

Just the other day, a neighbor made reference to her list of who to contact in the event of her death. I asked for additional information and she told me that she has a single sheet of paper on which she has listed the people who need to be notified when she dies. This includes her family and friends but also includes business contacts such as the Electric Company, her bank and other entities that may need to know that the inevitable event has occurred.
If you were to fill in the worksheets in "Assisting Our Aging Parents and Patients" most of these contacts would be listed. It is a good idea to make such a list and to update it on a regular basis.

Information: More is Better

As we age and find that our bodies are trying to betray us, we will need the assistance of others for day to day activities and decisions will need to be made regarding health care. When we find ourselves helping with these decisions for our loved ones the steps we need to take are much the same. Ask questions until you and your family are satisfied that you have enough information to make a good choice.
What constitutes a good choice is unique to every person and family. Some folks may want only enough care to be comfortable and others may want everything that the medical community can provide. Most of us will fall somewhere in between. We also need to remember that choices may shift over time and our health care proxy needs to know if we have had a change of heart concerning what level of care we want so that our desires may be respected.
It is also important to be sure that our health care proxy is able to follow through with our wishes. If we want to be made comfortable and decline the use of machines or feeding tubes to keep us alive and our health care proxy is insistent that all medical science be attempted to keep us alive there will probably be a moral dilemma to be resolved if and when these choices need to be made. 

Death and the Aging

It has been quite awhile since I posted a blog entry. Life has gotten ahead of me in the form of a crashed hard drive and in the middle of all that, death has also paid a visit.
As anyone can tell you, death comes to all things that live at one time or another. In this case, my 84 year old cousin passed away. Her funeral was a celebration of her life and we all had the chance to formally say good-bye. This formal leave taking is the true purpose of funerals.

Of course, as we age there are increasing numbers of funerals to attend as our elders begin to die and then as we get even older, our contemporaries will die as well. It is important to help our aging parents to participate in this solemn ritual that is a part of all life. If they have any difficulties in getting to the place of the services, take the time to provide transportation. Most places are accessible and will find ways to get people in no matter what the challenges may be.

These occasions will offer the opportunity to learn what your aging relatives may want if you don't yet know. I am not advocating that you ask directly but if you listen you may pick up a clue or two. My first thought at my cousin's funeral was that she had been cremated because there was no casket and a recent photo was displayed at the altar. As it turns out, she had made arrangements ahead of time to contribute further to society by donating her body to science. Her choice stimulated plenty of conversation at the "victory feast" luncheon that was held after the services. Plenty of people were very open about what they had in mind.

Where should the Aging live?

As we approach the end of life, we may find that it is no longer possible to attend to our daily needs without assistance. Sometimes this occurs gradually as we age and sometimes we have an event that creates a significant change quickly. In either case, a decision needs to be made regarding where we will live, in our own home with assistance, with one of our children (or other relative) or in a facility. Each of these options has benefits and drawbacks.

Living in our own home with help has much to recommend it from the comfort point of view. It can also be less expensive or significantly more expensive depending on how the help is supplied. If family members are able and willing to provide the support there are health care professionals available to provide whatever training may be needed. This is the least expensive in terms of money and can be expensive in time and effort of unpaid caregivers. If there are limited financial resources or limited family supports this may be the only long term solution.

Living with children or other relatives can be a solution that appeals to all involved or may be an emotional situation with potholes like a road at the end of a hard winter. Because of the level of mobility in our lives, relatives may not be living near enough to make the move an easy one and we may feel like guests in a new living situation. If there are strong relationships and open lines of communication this can be satisfying for everyone involved. Even if this necessitates a move of a great distance it is possible that this is the best choice for all. Multiple generation living arrangements can be good for all involved with guidance from health care providers as needed.

Living in a facility may be a good choice if there is money enough to pay for the care, particularly if the “ancestral home” can be sold to provide support for part of the cost. There are many facilities that provide effective, safe care as independent living (an apartment with access to a communal dining room), assisted living with a few more services or a complete nursing care facility. Despite fears to the contrary most of these facilities are safe and effective. You need only be observant to be assured that all is well.  

Complain Effectively on Behalf of the Aging

We have all had occasion to be dissatisfied with a turn of events. The waitress may be too slow, the car is not repaired properly or the dry cleaning comes back without your favorite shirt. The trick to getting these circumstances fixed is to make your concerns known clearly and to the correct person.

The first thing you need to do is to get your facts as straight as possible. Verify what your relative is telling your happened (or didn’t happen when it should) as much as possible. Get as much information first hand as you can. If you are working on what you have been told, be sure to convey that to the person you hope to help you. “My relative tells me… how can we verify if this is real and how can we resolve the issue”?

After you get your information together, ask to speak to the right person. Start with the person you think may be responsible to your relative in the circumstance. This would be the nurse assigned to care for your relative that shift, the contractor responsible for the work with the concern or whoever may be identified by your relative as the problem. State your case clearly with as little emotion as possible. If there seems to be an emergency be sure you think that there is a danger of a poor outcome right now. Relate what happened as best as you know and how you think that things may be fixed. Remember to avoid accusing language, the person probably did not intentionally do something wrong. It is also possible that you don’t have all of the facts. This conversation needs to be a give and take, state your case and listen to the reply.

If the first person doesn’t respond to your concern (ignores you or dismisses you) ask to speak to their supervisor. Continue to rise through the chain of command until someone listens to your concerns.  Most of the time, you will be able to resolve issues at the first or second level in the chain of command.

Questions about the End of Life

Over the years the health care community has developed ways to extend life through surgical procedures, medications and machines. Sometimes the use of the newer technology will result in saving a life and allowing the patient to return to normal activities or an ability to care for themselves with a minimum of assistance. At other times the patient is kept alive without what most of us would call a good quality of life.

Here in the US there is an expectation that the patient will be an active part in the decisions concerning health care. Choosing the high tech, newest procedure on the market or a lower tech and only proven methods is a matter of personal style. We need to work with our health care provider so that he/she knows what care will fit us best.

When we find that we are involved in making end of life health care decisions for ourselves or our aging family members, we will make better decisions if we are working from a working understanding of the choices. A question to be asked as a part of the process is “Will this (procedure, surgery, medication) only prolong my or my family member’s dying?’  Also, it is appropriate to ask what is to be gained by a particular course of treatment.  Never be afraid to ask questions until you understand the proposed treatment and the expected outcome.

End of Life

There is a great deal of discussion on the TV news shows concerning end of life concerns and the effect of the discussion on those involved (the identified patient and the family) The significant thing that we seem to have lost track of in the US is that death in NOT an unnatural event. Another point to keep firmly in mind is that the decision to treat or not to treat lies largely with the patient. Doctors are hard wired to try to treat patients and to keep people alive. Sometimes this overflows to an at all cost effort. There needs to be a balance treatment to promote healing versus treatment to prolong dying. Quantity versus quality is the ultimate question to be addressed by the patient, the family and the healthcare providers.

Attitudes toward death and dying shift over time and the discussion needs to be revisited from time to time. Remember that there will always be decisions to be made, the goal is to have a framework in place to provide guidance to the family if the patient is no longer able to be involved in the process.