Everyone agrees that when the time comes they want a “good death”. This doesn’t magically happen, it takes planning on the part of the patient. Making end-of-life care choices is one of the biggest, most important decisions in a person’s life. It is the patient’s responsibility to be proactive towards treatment they do or do not want to receive. Only after being fully informed about the diagnosis, prognosis and treatment options will they feel more in control.
Americans plan everything in their lives from schools, careers, weddings, vacations and retirement but avoid plans for end-of-life. The reasons for this range from being too busy, not wanting to talk about death and dying and just putting off things that are unpleasant, thinking you’ll deal with it tomorrow. The most valuable tools to have in place for end-of-life care are Advance Directives. These include two types of documents, a Living Will and a health care power of attorney. A living will allows an individual to refuse life-sustaining treatment in the time they are terminally ill. A healthcare power of attorney covers all health care decisions, and lasts only as long as you are unable of making decisions for yourself. A responsible person doesn’t leave this these decisions until crisis strikes and they no longer are able to communicate their wishes. This is an emotional time for spouses, adult children and siblings. It is also difficult to figure out exactly what the people they love would have wanted. It is the family’s responsibility to talk about such things as;
• what medical treatments and care are acceptable
• do you wish to be resuscitated if you stop breathing or if the heart stops,
• do you want to be hospitalized or stay at home.
Discussing how your care will be paid for and if there is enough insurance should also be brought up. A trusted person should know where all the important documents are; insurance- medical, long-term care and life policies. Instructions should be written out for the funeral, burial or cremation choices.
Being honest and open with the physician is key. The doctor must honor the patients’ wishes or else transfer their care to another doctor that will. Getting second and even third opinions from different doctors is another way of taking control of your medical care. Having complete knowledge of what’s in store is the only way to make responsible decisions. Making sure the health care provider is on the same page when it comes to the physical, emotional, psychological and spiritual care of the patient will ease the dying person. Knowing that medical decision making is a process which allows changes throughout care.
Death is such a taboo in today’s society. For this to change people must get thinking and talking to their family and doctors. This will give the patient a voice, health care providers clear ideas about choices at the end-of-life and comfort to the family that they have no doubts about what their loved one wants. We must all take responsibility for ourselves.
Medicine today focuses on the diagnostic and clinical care for the terminally ill when more emphasis should be placed on their comfort and care. Everyone imagines that they will have a long, full life with; plenty of time to achieve their goals and dreams. Even the best laid out plans can get detoured. We often think of terminal illness as happening to others, certainly not to ourselves. Atul Gawande showed us through his article “Letting Go” http://www.newyorker.com/reporting/2010/08/02/100802fa_fact_gawande that the initial response to an unfavorable prognosis is to “fight.”
With all of today’s medical advances we tend to believe that there is a cure for most diseases, or there may be one in our life time. This belief combined with our fear of dying makes it so easy to believe that an untimely death could or could not happen to us. Just because we can sustain life through medical interventions, medications, IV tubes, respirators and ventilators, the fact remains that these interventions and side effects are often worse than the disease, not giving you the quality of life. It is a balancing act for the doctors as they must be encouraging along with being realistic. They need to talk about what to hope for while also discussing how to prepare in case it doesn’t work out.
If communication skills were taught and practiced as much as technical skills in medical schools, there would be a huge improvement in patient care. Doctors need to help the patient decide what is most important to them when they are dying and then work towards achieving the patient’s goals. Ideally every terminally ill patient should be connected to a trained caregiver. This would help the patient learn more about their options, deal with anxieties such as being a burden to love ones, financial problems, pain and suffering, and ultimately their death.
A balance must be found that combines life prolonging treatment along with palliative care. Patients need to be informed that they don’t have to choose one over the other. This would lower overall costs and mean fewer visits to the emergency room and decrease the time spent in the hospital. The sooner these issues are addressed the sooner the patients will feel more in control of their situation leading to a more peaceful death. Medicine should be about comfort and care, not solely focused on cure.
There are many movies that come to mind when thinking about the loss of a main character. The one that moved me the most was “P.S. I Love You.” It begins by showing a young couples day to day life– where the wife is constantly complaining and worrying about the future; while her husband was more laid back and fun loving. The movie fast forwards to a bar scene where friends and family are gathered to celebrate his passing of a brain tumor. In doing this, the media skipped right over the whole dying process. In fact, the movie never showed the initial diagnosis, treatment, his suffering and his actual death. He knew his death would make her lose her will to live, so he planned for notes, cakes, and activities to be delivered to her over the next year. Knowing he wanted her to move on, he encouraged her to go out of her comfort zone and view life more optimistically.
This movie has inspired me to: not sweat the small stuff, appreciate every day and never take your loved ones for granted. I’ve learned even if you’re faced with adversity there may be better opportunities that present themselves which may not have been recognized before. Through this movie I now fear death less knowing that our loved ones will always have an influence on our lives, even after they are gone. In “P.S. I Love You” his death was celebrated and instead of mourning he wanted his family and friends to focus on the good times they shared together and continue to see life as he did.
In our American culture we deny feelings that are painful– death being one of these. This allows us to emotionally distance ourselves from the inevitable. In “P.S. I Love You” death and dying were never addressed which is how the media often deals with this subject. Keeping the audience entertained is their main focus without dwelling on real pain, suffering and emotion. They accomplished this by not always use direct language when addressing death, instead using terms like, “passed on” or “no longer with us” but the overall idea is understood.
Each of us has different life experiences which influence our outlook on death and the way we grieve. No two people are alike.