Our quality of life is a analysis we make for ourselves to some extent at various times in our lives, particularly when we are experiencing different kinds of stresses. Those who are chronically ill, infirm or disabled must likewise have given thought to what kind of life they have been living. It is not common for us to express to others exactly how we look at our lives. Moreover, in situations where critical decisions regarding health have to be made, health care workers may not know how patients evaluate their quality of life. Sometimes because of this ignorance, physicians and other heath care workers make guesses about their patient's quality of life in order to plan management. Sometimes these guesses are based simply on age ("the patient is 95 years old") or sometimes on where and how they live ("the patient is bedridden in a nursing home") or at times simply by the diagnosis ("the patient is a quadriplegic" or "the patient has Alzheimers disease"). At other times, formal "quality of life instruments" are used, tests of physical functioning or psychologic factors for example, the results of which are said to help estimate the patient's quality of life. There is a concern in the ethical and medical community about the use and accuracy of quality of life conclusions by health care workers of their patients. The question arises as to whether quality of life of a patient should be a decision-making factor in the care of a patient and, if so, should physicians and other health care workers make such an evaluation.
Here is the question:
Hi, I do not see any reason why "quality of life" should be included in medical decision making. Such decisions may be justified by medical personel claiming "impartiality" in such decision making, this judgement being qualified by thier professional status but at its basis, decisions on another persons experience of their daily life can only be subjective. For one person, a life of constant pain can be a nightmarish existence whle for another it could be a process of spirtual growth. Physicians should treat a patients illness and leave judgements about continued existence to the patients or their relatives. To also base judgments on an assessment of the patient or relatives "educational level etc" seems the height of arrogance. Judgements about status or ability are often based on factors such as dress or speech patterns and have more to do with social prejudice than objectivity.
Should quality of life of a patient be a factor in medical decision-making and if so should physicians and health care workers ever make such an evaluation?
Having been the primary caregiver for my daughter Kelly, who had Juvenile Huntington's Disease for 15 years, there were instances where the health care profession felt their evaluation of her quality of life outweighed any personal choices she may have designated. Before she was fired as her primary physician, this doctor tried to force her opinions and surgical recommendations (feeding tube) on my daughter and continually harassed me with horrific descriptions of Kelly's death that she said I would be responsible for by denying Kelly her recommended treatment. It was several years later before Kelly actually needed a feeding tube (age 27). When the (new) doctors explained, with compassion and sensitivity, that she was at a cross-road of choosing life or a gentle death, after careful consideration Kelly chose LIFE.
At that young age, Kelly fought to live with every fiber of her being. In the last year of her life she was constantly bedridden, unable to communicate and required 100% total care. Although HD had disabled her physical body, her cognitive/mental abilities were intact and the ability to still ENJOY life, through the loving care she received, was obvious to everyone who saw her. Kelly's eyes would still twinkle in mischievous delight, her laughter still rang out, and with patience and love her needs were determined. She was alert and attentive to things around her, still enjoying company of the friends that remained, her favorite TV programs, etc. It was only during the last few months of her life that that sparkle and quest for life ebbed from her eyes and whether she and/or God chose the timing, she died very peacefully when she was ready.
My suggestion to other Huntington's Disease families is to urge them to do as much advanced planning as possible in letting the person with HD select the choices they want in their care as the disease progresses through the end stages. To support them in these decisions I put most of the resources I had on this subject onto a webpage called "Our Final Journey" http://endoflifecare.tripod.com/Caregiving/ Kelly and I took care of all those decisions several years before she was unable to communicate and having them completed provided some relief from the mental anguish and heartache families go through during any crisis.
The other recommendations I make to families are:
1. Make sure their primary care physician honors a persons right to die, i.e. will honor decisions not to have life supporting equipment (such as feeding tubes). If your physician will not, or waivers in their answer, get one that will.
2. Use resources such as Assessments to Daily Living (ADL) to help determine the level of care your loved one needs to discuss options with their primary physician but NOT to asses their Quality of Life.
3. If and when the time comes where previously decided medical decisions must be made right now; for the person who is still cognitive and capable of making a decision, allow them to reconsider that decision for their immediate need. A lot of people opt for a feeding tube or other procedures that they were adamantly against when healthier/decisions were made.
4. USE resources such as Hospices when the patient is eligible and do not wait until the last few days of life. Kelly was with the Suncoast of Florida Hospice for three years before she died. Hospice was originally recommended by her then-physician five years before she died. Too many families feel that allowing Hospice to enter into a loved ones caring triad that death is imminent or that the patient will give up their will to live knowing they "must be going to die" if Hospice is involved. Explaining to a loved one that Hospice is just another resource to help them and their caregivers helps alleviate some of that concern.
To Health Care Professionals: I urge anyone in the health care industry to listen to the family, know the patient and their wishes and do everything in your power to help them achieve the choices they have made. Please, do not impose your choices on them. Most are quite capable of making their own when reasonable options are explained to them.
Thank you for this opportunity to express my thoughts on this topic.
Warmest regards Jean E. Miller Clearwater, FL
The individuals quality of life should be left up to the individual assuming they are mentally and physically capable of making that decision; if not than an immediate family member, husband,wife, child etc. should make that decision not a care giver, the doctor is not god and has no way of knowing what that persons prior life was like and what his or her future should be i dont believe that prolonging life just for the sake of it is right but i also feel that taking a life no matter how justified it might seem is the way we should be going life is precious in all its forms who are we to decide who should live and who should die.
My nephew,29, suffered a series of seizures as well as a heart attack as a result of cocaine usage. He was found not breathing in his car. Upon arrival to the ER he was resusitated and placed on a ventilator. They do not know how long he was deprived of oxygen. For the first few days he was in a coma, so we are told. The first eeg showed brain activity interspersed with "fence posts" indicating continous seizure activity. The only body movements were de-cerebrate posturing and coughing. The second eeg, done five days later showed basically flat line, less than 2 percent activity. The 1st neurologist said the prognosis was "grim" the 2nd has done a cat scan to check for swelling, nothing, and has done tests to check for amonia levels, since after 8 days his bowels had not moved. It has now been 10 days, my sister and ex-husband are agonizing over the decision they now face. Although Greg does appear to open his eyes, there is nothing there. The eyes are truly a window to your soul and this poor child is gone, somewhere, not here, not there. not dead, not alive. Its a decision I hope no one reading this ever has to make for a child or a loved one. I only wish that he had had a dnr or other health care directive in his wallet and could have made it clear to er personnel his desires. He was doa on arrival and should have been let go at that point. My point is, plan for the unthinkable, have in place and on your person some sort of emergency directive for health care personnel to rely upon if you are not about to speak for yourself. Thank you.
I am a premed student and worked as a CNA in a convalescent hospital for 1 1/2 years. One poignant thing that stands out in my mind about that experience is how resilient the human body is. There were many cases where we thought the patient had a very low quality of life and was very close to death. Then the patient would amaze us with recovery. Often I would ask the patients afterwards if he thought he was close to death. And more often than not, I discovered that his perception of his quality of life was much better than our prognosis. So this discrepancy really poses the dilemma for me regarding a health care professional's right to use his/her jugdment on what is high vs. low quality of life. Perhaps, the patient's not ready to give up yet.
I am a first-year nursing student and though I may not have had quite the same experiences as some practicing RN's or Hospice Care nurses, I do have my own opinion on this subject. It has already been mentioned what quality of life can be defined as, so I won't waste time there. I do believe that sometimes we are twisted in the way we approach quality of life. Do we have the patient state it for us...what if they can't? Do we go to thier loved ones and then they define it for us?
I worked in a nursing home,where, in my opinion, one too many patients was immobile, on feeding tubes, on oxygen, and so on. I would disagree with anyone who said these patients had a good quality of life. I think in this situation we should look more to the family's feelings and try to figure out why they feel that it is necessary to continue with this treatment.
I have a grandmother who is in the final stages of Alzheimer's disease. I watched the whole transition take place right before my eyes. To say now that her quality of life is the same compared to 2 years ago would be a lie.
To say that there is potential for improvement, well there is none thus far. Now saying this, why shouldn't the health care team evaluate this? Should they ignore it, so my grandma can live for 10 more years, if you even call that living? In my opinion, I hope they take that into consideration when evaluating. While I want my grandma to have the best care, my family will not push to prolong the dying process by any means. I agree with M Takroui who said it should be a "social code and tradition."
As a hospice nurse, quality of life often directs the plan of care for my patients. But, it is very important not to guess at it for each individual. The patients stated quality directs what side effects he/she is willing to tolerate, what treatments to accept, and even if the patient is 'ready' for hospice care. An example comes to mind, I have a patient who lost his knee joint and thus his ability to walk. Because of his heart condition and general debility, his primary MD declared him a poor surgical risk and no surgeon in the area will touch him. Prior to his disability he was a very physically active person with gardening, fishing, and general puttering around the yard as activities of daily living. Now he is confined to piviot ferom bed to wheel chair to recliner. There is no activity to enjoy from his perspective. Despite the fact that he has little pain, has his wife caring for him, and is free of other symptoms his suffering is great. He would have rather died on the OR table than live in his current state. It has been a little over a year now, a year of suffering. His primary MD assumed life, even with this mild disability, would provide a quality existance for this patient...had he bothered to ask the patient he may have understood that life without working legs is true suffering for this man. It is tempting as a human being to assume that what we each consider quality would be enough for anyone. I could find joy in art, reading, thinking, and interacting wiyth my family were I in this patient's shoes so why isn't he just happy to be alive? This is a dangerous assumption for a health care provider to make. Competent patients' opinions about what constitutes a quality life must be considered in offering treatment options.
Thank you, Kathleen Dunn RN CHPN
Dear Dr. Mo,
I am currently taking classes towards my BSN, I am a practicing R.N. The class I am taking in an internet class on Quality of Life, and I have read many articles concerning the subject. Some are based solely on statistics and bar charts. Others are more thought provoking, as the subject of quality of life deserves.
My opinion to your posed question is, no, the medical staff should not be influenced by the patients QOL. I've seen too many times, the patient who comes back from deaths door, to lead many productive years. I've also seen a supposedly healthy patient take a turn for the worse and either die or become totally dependent on someone for the rest of his life. Quality of Life is too subjective for any one person to make a determination on how a person is to be "rated" or "ranked" based on how their health seems to be at that moment.
I've asked many family and friends what they percieve to be quality of life. The answers are as varied as the research articles I've read, and most involve happiness, and what they have accomplished over the years. And this definition changes with age, wisdom, births, deaths, etc.....We are only human, and as such we are complex and deserve every opportunity to reach our potential, even if others see that potential as limited. Thank-you, Janet McCord R.N., Chesterton, IN
Determination regarding quality of life can only be made by the individual in question whenever possible. As a hospice nurse, one of the most gut-wrenching situations I was involved in, was with a fifeteen year old with end stage muscular dystrophy. By the time "Robbie" became a hospice patient, his mother could no longer care for him and he was placed in a nursing home. Caring for a teenager was difficult enough in itself for the staff, let alone one with a terminal illness. One of the many issues before the staff was Robbie's desire to be a "full code" rather than a "Do Not Resuscitate" (DNR). Robbie was totally bedridden and could provide none of his own care, he could only move his head from side to side and had some movement in his fingers. To all his caregivers, Robbie's quality of life was very poor. They could not imagine why any teenager would want to live the way Robbie had to live. Yet, for Robbie, life WAS worth living. He wanted very much to be resuscitated in the event of cardiopulmonary failure. Robbie loved interacting with people and he wanted very much to write a book about his experiences "to help other people". The nursing staff was very upset about the prospect of possibly having to do CPR on this child and of "bringing him back" to this poor quality of life. My task in this situation was to be a "sounding board" to the staff for their feelings and emotions while being an advocate for the wishes of my client. I believe that much of the problem for the staff had to do with the issue of "bringing Robbie back" to their care. It would be easier to "let Robbie go" and then not have to be subjected to caring for this teenager with this poor quality of life. I realize that the situation I've just described is made relatively simple by the fact that Robbie was able to state his wishes and that it's not always possible to know the wishes of the individual. However, even in these "simple" cases, I see many abuses by physicians and health care professionals. Thank you for these discussions.
The first challenge presented by the question is how to define "quality of life." We agreed that quality of life is defined by more than just physical capabilities, it also includes emotional, spiritual, and circumstantial elements. However, the importance given to each of these elements varies from person to person and may even vary for one person over their lifetime. We cannot deny that as health care professionals the way we define quality of life impacts our medical decision-making all the time. But what is the case isn't necessarily what should be the case. Given that patients define quality of life differently from other patients and from the health care workers involved in their care, quality of life should only be a consideration when it is the patient's or surrogate's interpretation of quality of life that is referred to for decision-making purposes.
Rebecca Whitt Warrick on behalf of West Park Hospital Ethics Committee
It is very sad that inspite of technicological progress we still intangled in our shadows. some time you go to save some human in distress and ending doing more harm than good. What become of tetraplegic who can not breath but being resuscitated two and three time to be a "chronic" intensive care patient on ventilators. nobody dare to question the never ending attempts to resuscitate. What kind of life he is leading. A patient who get hypoxic brain damage and lead cabbage existance without any response except the basic reflexes and he is breathing sponatneously but he never dies. A patient going deep in aging and get his atherosclerosis hitting every aspect of his body then he is offered to surgery bit by bit till the time force every body to quit. These are three real stories I had experienced and could not overcome the emotional and social pressure to lay still. poeple hang to their ill members in a very unhealthy way and you could do nothing about it. what advice you give will find somebody to rebounce and argue. it should be social code and tradition.