We have noted in our End of Life section on this Web site resources that better inform and prepare individuals who may be experiencing death for the first time. We also provide links to organizations that seek to help prepare an individual for the passing of a loved one. There is no doubt, that with medical advances that can prolong life so too will arise moral issues as to what extent medicine can support life although the quality of living does not keep step with medical advances. Recently, researchers at the Mayo Clinic are drawing a distinction between one’s lifespan and their healthspan, or the quality of one’s life at a given time. Recognizing that a majority of adults over 65 will develop at least two chronic diseases such as diabetes or heart disease, the issue become one of determining how the quality of life changes s the effects of chronic or other diseases make radical changes in our lifestyle. there is a growing awareness that individuals have the right to direct their medical treatments and guide their life in accordance with the quality of life that may accompany chronic disease or failing overall health. Legal documents such as advance directives and no not resuscitate orders can assist an individual in making decisions as to how long and to what extent they wish medical interventions to prolong their life.

One alternative to death without the intervention of another individual is the decision to stop taking food or liquids. Unlike assisted suicide, the cessation of taking food or liquids is an individual choice that can be specified in an advance directive. Stopping eating is not suicide as it I a choice made by an individual who is at the end of their natural life. When this decision is made, an individual becomes progressively weaker and death comes weks or months sooner than if the individual had been hydrated and nourished. Individuals making this decision do so to avoid prolonging pain, to gain control over their own death, According to a study in the New England Journal of Medicine, individuals who make this decision are generally the elderly who have a poor quality of life.

Legally, the United States Supreme Court ruled in 1990 ( Cruzan vs. Director 1990) that artificial nutrition and hydration are not different than other life-sustaining treatments. Courts in the United States have made the following  rulings consistently in the recent past:

• Competent adults may refuse artificial nutrition and hydration treatments even though this action may hasten death;

• Surrogate decision makers may withdraw artificial nutrition and hydration;

• Surrogate decision makers may refuse artificial nutrition and hydration on behalf of an incompetent adult.

One might question whether the cessation of providing water and food is effectively killing a patient or allowing a person to die as an indiviual cannot live without food and water. Generally if an individual has expressed the desire for the cessation of food and water the health care team and patient’sfamily members discuss if  hydration and food will benefit the patient. Physically, a person’s body begins to shut down prior to death thus food and water are processed in  manner distinct from a healthy individual. Providing water may actually bloat an individual and providing food may cause intestinal problems and discomfort.

Does And Individual Suffer When Food and Water are no Longer Given to Them

Medical research indicates there is no suffering. The New England Journal of Medicine (Jacobs, 2003)reported 94% of nurses reported these patients’ deaths as peaceful. The cessation of eating and drinking is a normal part of the dying process that typically occurs days to weeks before death. Once the body becomes mildly dehydrated, the brain releases endorphins which act as natural opioids, causing the patient to feel euphoria as well as less pain and discomfort. Surprisingly, few patients express the feeling of hunger or the need for water although the mucous membranes and mouth do become very dry and are generally moistened to lessen the discomfort.

How Does Cessation of Food and Water Compare to Doctor Assisted Suicide?

When death by voluntarily stopping of eating and drinking was compared with death resulting from physician-assisted suicide (actions, which an individual helps another person who is terminally ill die upon their wanting to do so) nurses reported that patients in the former group had less suffering, less pain, and were more at peace than the latter group. Nurses reported that both groups had a high quality of death, which sounds strange but means that their deaths proceeded with lower levels of pain and struggle.

How Long After Does Death Occur?

Once a person stops eating and drinking, death usually occurs within two weeks. He may continue to take small amounts of water to swallow pills or moisten his mouth, and these small sips of fluids may prolong the dying process by a couple of days.

The decision to stop drinking and obtaining food is clearly a serious decision which must involve the individual, relatives, and care providers. In making that decision one must consider religious, moral, ethical, and medical issues. The best solution to making the decision is to have a discussion of long before one is nearing the end of life. For that reason, people state their preference in their advance directive following discussion with their family members, religious representatives, and physicians.

Cruzan v. Director, Missouri Department of Health, 110 S.Ct. 2841 (1990).

Jacobs S. Death by Voluntary Dehydration — What the Caregivers Say. N Engl J Med 349:325, July 24, 2003.

Photo:http://www.flickr.com/photos/ryanstone/1051869571/sizes/m/in/photostream/

http://www.flickr.com/photos/judybaxter/303514027/

A new broadcast by PBS’ Frontline, entitled Facing Death, explores end-of-life decisions in the Intensive Care Unit (ICU) of The Mount Sinai Medical Center in New York.

The broadcast focuses on the issues that confront families, doctors, and patients as their chronic medical conditions bring them to the brink of death.

As patients and families weigh choices such as removing feeding tubes, continuing aggressive treatment when the odds of extending life are minimal, when surgeries can be preformed, and at what point the services of hospice may be required.

An intriguing element to this production is how different doctors react to a patient’s medical condition—some pursue aggressive treatment, while others attempt to counsel patients and family members about the limited options for continued treatment. As noted in the broadcast, no one wants to die, but the dilemma for physicians and patients often rests with the decision of how far to push for medical treatment that is extremely costly and may simply prolong the emotional burden on patients and family members. These are difficult issues to address and Facing Death provides a vivid presentation of how the medical establishment deals with end-of-life decisions and the options that confront families.

The entire broadcast is available for on-line viewing. In addition, a supplementary Web site contains useful links to articles on end-of-life medical costs, death and dying, end-of-life care, palliative medicine, and living wills.

The PBS Frontline Web site can be accessed here.

http://www.flickr.com/photos/stuckincustoms/4220816433/

“In this world nothing can be said to be certain, except death and taxes.” Benjamin Franklin (1706-90). While death, as an event is certain, how one dies is a matter of faith, planning, understanding of the medical profession, family needs, and communication with loved ones.

Discussing Death

Unfortunately, cultural values and traditions in our society tend to avoid open and frank discussions of death. Instead we rely upon the medical establishment or nursing homes to “deal’ with the dying. Death in America, therefore, is something we rather not discuss, rather not plan for, and something we rely upon others to address. Undoubtedly, demographics may change this view.

With the surge of individuals who will become elder Americans, demand for the services of the health professions and caregivers will stress the capacity of hospitals, nursing homes, extended care facilities, and home care providers. Added to these demands, we will experience the ability to prolong life with technological and pharmaceutical advances.

Many of the elderly will be unable to meet the financial burden of living in nursing homes or being maintained on life support in hospitals. Others may be able to afford these costs, but will question their quality of life and whether they want aggressive treatment that prolongs their life but does not cure their medical condition. Discussions of death will certainly become far ranging as political, religious, and economic interests express themselves in efforts to shape policy, beliefs, and cultural behaviors.

As we explore the issues of death we look to the stories of the living. Through their words we gain a richer understanding of how their experiences may shape our own thinking of death and how we may better prepare ourselves for that certainty we all will face. In upcoming posts on this site, we will offer the stories of a variety of individuals who have struggled with the issues surrounding the death of a loved one and their reflections on that experience.

Hopefully, these stories will begin a dialogue among our readers to provide assistance to others who are facing the very complex issue of death in our society.

Feeling Grief

Grief is a natural aspect of life that is experienced when a loved one dies, when one is divorced, or the loss of a job. The experience of grief brings the feeling of being numb, as if you are in shock. Physically, one may experience trembling, nausea, trouble breathing, muscle weakness, dry mouth, or trouble sleeping and eating.

The emotional aspects of grief may bring anger, withdrawl, nightmares, feelings of not wanting to return to work or to see friends, or being forgetful

How long does grief last?

Grief lasts as long as it takes you to accept and learn to live with your loss. For some people, grief lasts a few months. For others, grieving may take years.

The length of time spent grieving is different for each person. There are many reasons for the differences, including personality, health, coping style, culture, family background, and life experiences. The time spent grieving also depends on your relationship with the person lost and how prepared you were for the loss.

How will I know when I’m done grieving?

Every person who experiences a death or other loss must complete a four-step grieving process:

(1) Accept the loss;

(2) Work through and feel the physical and emotional pain of grief;

(3) Adjust to living in a world without the person or item lost; and

(4) Move on with life.

The grieving process is over only when a person completes the four steps.

How does grief differ from depression?

Depression is more than a feeling of grief after losing someone or something you love. Clinical depression is a whole body disorder. It can take over the way you think and feel. Symptoms of depression include:

• A sad, anxious, or “empty” mood that won’t go away;
• Loss of interest in what you used to enjoy;
• Low energy, fatigue, feeling “slowed down;”
• Changes in sleep patterns;
• Loss of appetite, weight loss, or weight gain;
• Trouble concentrating, remembering, or making decisions;
• Feeling hopeless or gloomy;
• Feeling guilty, worthless, or helpless;
• Thoughts of death or suicide or a suicide attempt; and
• Recurring aches and pains that don’t respond to treatment.

If you recently experienced a death or other loss, these feelings may be part of a normal grief reaction. But if these feelings persist with no lifting mood, ask for help.

To learn more about dealing with grief, read our section on grief support.

photo:http://www.flickr.com/photos/spunter/2964161654/.

http://www.flickr.com/photos/deapeajay/2181077501

Experiencing the end of a loved one’s life can be a tremendously difficult experience. For many individuals, they are acting as a caregiver during the last part of a loved one’s life.

By itself, that can be an overwhelming experience. Many caregivers, however, still have to balance working at the same time. Fortunately, some companies are now providing support to employees who are caregiving for loved ones.

Employee Support

Pitney Bowes is among other companies who are offering support to employees. The company provides flexible work schedules, support groups, and even legal and financial resources on hospice and palliative care.

The flexible work schedule can be a life saver for caregivers who many times have to modify their schedule at a moment’s notice to accommodate the individuals they are caring for. The article notes that 1 in 5 employees had to take a leave of absence from work for caregiver duties.

The access to resources, however, is a really a great benefit for employees. In many cases, caregiving employees do not have enough time to conduct their own research on end of life care. Getting pointed in the right direction is just one less thing for an already overwhelmed individual to think about.

Employers recognize the benefit of providing support

For some caregivers, if their workplace cannot accommodate their need to provide care for a loved one, the employee will simply quit. Not only is an employer losing a valued employee, the employee may harbor negative feelings towards the employer for not being accommodating.

As the demand for elder care services increases, this will become a more frequent issue for employers. Tackling the silver tsunami head on, and providing support for employees, certainly seems to be in the best interest for both employers and employees.

As the percent of the population that is 65 years or over increases, so too does the number of suicides among the elderly.  In Minnesota, the highest suicide rate since 1990 is for white men over the age of 75.

Statistically speaking, as the number of elder individuals rises, the number of suicides is bound to also increase. But that fails to examine the source of the problem, and possible solutions.

Some experts note that not all elderly suicides are not the direct result of depression, or other mental illness. Instead, they are taking their own lives because of a loss of control, loss of bodily functions, or crippling diseases. Some elders choose suicide because they want to end their life on their own terms.

Others make the decision in order to reduce the anguish of other family members forced to watch them slowly deteriorate. According to one medical ethicist, some elderly suicide cases are “hard to condemn.” It should be noted, however, that Minnesota does not have a right-to-die statute, meaning assisting an individual commit suicide can be charged as a criminal offense.

If you are concerned about someone you know could be suffering from depression, talk to them. Increased socialization and exercise are two ways you can help improve a person’s mental well-being. Many forms of depression are related to chemical imbalances, and can be partially treated by medications. Only their doctor will know what medication is right. There is no one right way to help someone with depression. Doing nothing, however, will not solve the problem.

(photo: jpstanley)

As people begin to grasp their own mortality, they develop strong feelings about which medical procedures they are willing to undergo in order to stay alive. Many individuals discuss their feelings about life-support, feeding tubes, and other life-sustaining procedures, with their spouses and family members. Many of these people, however, do not take the time to express their wishes in writing.

Creating a health care directive, along with a Provider Orders for Life Sustaining Treatment (POLST), can help ensure an individual’s wishes are followed.

a new trend

Oregon and La Crosse, WI, have adopted the document as standard practice. As a result, fewer individuals are dying in ways they never wanted, such as hooked up to life support machines. According to this recent article, Minnesota health care agencies are making a concerted effort to help patient with end of life planning. The documents will be flagged in individual’s medical files so personnel can easily find them. Allina Health Systems plans to talk to at least 4,000 patients this year about end of life planning.

family discussions

Health providers, however, cannot do it on their own. Families need to initiate the discussions with loved ones, and take the additional step of ensuring a person’s wishes are in writing. Some individuals in the health care field are acutely aware of the problem. According to Dr. Steven Miles, ”We basically have an ongoing non-discussion on the topic of end-of-life planning . . . [u]ntil families talk about it, it doesn’t make any difference how you rearrange the bureaucracy.”

There is nothing easy about initiating this conversation with loved ones. But if there is any doubt about how a family member wishes to spend their final days, it is a discussion that should take place now. If your family member drafts a health care directive, make sure you have a copy, or know where to find it. If you have any questions about what forms you need, or how to fill them out, be sure to contact a health care provider or attorney in your state.

(photo: Johann !)

Guest post by Bill Kern

At the end of my Mom’s life, I took a leave of absence to permit her to stay in her home. The support that hospice gave to her and to me convinced me that I wanted to volunteer when I had the opportunity, and have now been doing so for over 4 years.

I am personally more interested in helping a family share the end of a loved one’s life with respect and dignity than I am with tacking on the maximum number of days to a life span.

This spirit permits me to become as deeply involved as possible in each situation without experiencing excess sadness. I never have the sense of being in the midst of some tragedy, but rather see my role as doing whatever I am able to do to help a family get to a place where they’ve decided they wish to go.

Beyond the excellent training I received, perhaps the most important thing I had to learn was to completely set aside my ego. If I am able to enter a situation with compassion and respect – forgetting about how I need to perform – I am able to provide some service that is helpful. There is no duty on either/both of our parts to reach some profound level of consciousness to make a volunteer’s contribution positive.

I cherish some the of verbal, emotional, and physical connections that occasionally develop between a patient and me. But it is no ‘failure’ to sit with a totally unresponsive person for a few hours, allowing a partner some respite by napping, getting out with a friend or doing chores.

If there is not grief for me, there is unquestionably an intensity different than much of the rest of my life.  When a patient dies, besides loss, I experience some relief – a serious responsibility is over.  And then in just a few days, I am aware of what a huge hole there is in my life by not having that connection.  Being a volunteer is no noble sacrifice on my part; it is a gift that I give to myself.

(photo: Mendhak)

(Note: Republished original material by David H. Gustafson, see end for cite)

The Institute of Medicine defines a good death a “one that is free from avoidable death and suffering for patients, families and caregivers in general accordance with the patients’ and families’ wishes.”. The current system creates barriers to reducing the stress and suffering that accompany a patient’s end of life. Data and eHealth technology, if it were more accessible, could help patients, families, and caregivers to cope with end of life issues.

Introduction

Mom had Alzheimer’s. She was barely hanging on to her apartment in an assisted living facility and would soon have to move to an Alzheimer’s unit. Then breathing troubles started. In three days she was diagnosed with pneumonia, developed congestive heart failure, had a heart attack (one day after being admitted to the hospital), and died. In those three days more money was spent “caring for her” than had been during her entire life.

My dad died when I (the oldest) was 11. Mom raised three kids on a secretary’s salary, put three kids through college, and did so with jokes, smiles, and songs. Her view of life was: make lemonade out of lemons; get on with it; don’t complain.

She took the same approach to death. She got sick on Saturday, spent Sunday and Monday in an Intensive Care Unit, and died Tuesday noon. Even 30 minutes before she died she was trying to make it easy on us by joking. Then she waited to die until we went for to lunch because (I think) she did not want us to see her die. Like always, she did her job and moved on. She was 87. I loved her very much.

A good death?

The Institute of Medicine defined a good death a “one that is free from avoidable suffering for patients, families and caregivers in general accordance with the patients’ and families’ wishes” [1]. I wish I could say my mother got the care she needed and deserved. She did not; neither did we. Those whom I told our experiences suggest they are all-too-common. Hence, I would like to share these experiences here, and discuss the needs, but also responsibilities, of patients and family members at end of a life, and the implications for the health field.

She was lying in that bed. When she first arrived at the hospital, she was still able to walk. I know that even at my age, I can’t go as long without physical exercise as I used to. When I take time off and get back to it, my muscles are sore. How long could she stay in that bed before she would no longer have the muscles to walk out? Would she not be able to return to her assisted living apartment? What about her heart attack? How much would that limit her?

Even in her debilitated mental state, she was probably the most rational person of us all. Mom knew what she wanted: to have the restraints and tubes removed and to go home. We were told that we could have none of that. The pneumonia had to be treated. The restraints had to stay on. The tubes had to stay in. Could her antibiotics be given by intramuscular or by pill? What if we took out the tubes, stood at the door and told the nurses to leave our mother alone? What would they have done? What rights do family members have and how could we exercise them?

The thing that bothered me the most was those restraints. I wonder if my mother would have had the heart attack if she had not been placed in restraints. Did the hospital “kill” her? Did the heart attack kill her? Or did she die of a broken heart? Let me explain. I was told that when Mom got to the hospital, she kept pleading to go home. Over and over and over again. The Alzheimer’s had made it difficult for her to deal with change and when the nurses added the IVs, she became combative. A team of nurses had to use restraints to subdue a frail 87-year-old woman! Straps held down her hands so she would not pull out the IVs. Mom hated lying on her back, but the restraints made it impossible for her to lie on her side or even to scratch her nose. She continued to fight the restraints for several hours, all the time asking why she was in the hospital and why she could not go home. After a while, she was just exhausted, and shortly after that, she had a heart attack. If I were 87, begging to go home, and doing everything I could do to fight restraints, how long would my heart hold out? Did this have to happen? What rights did the family have? How could we have intervened? Looking back, I wonder what would happen if everyone working in an ICU were required to lie in restraints for just one hour.

I found that not all “do not resuscitate” (DNR) orders are the same. A nurse in the ICU told us that Mom’s orders were signed so long ago (seven years ago) that they were not valid. But now she had Alzheimer’s and, because of her limited cognitive functioning, had given up power of attorney for health care. Was the nurse right? How were we supposed to know that? What can we do now?

The ICU nurses said that my mother’s assisted living facility could not handle a person as sick as she. Again, we had so many unanswered questions. Is it illegal for an assisted living facility to provide such care, even on a temporary basis? Could our family have hired 24-hour nursing care and kept her in the assisted living facility? Where could we find good caregivers even if we were allowed to? How would we know a good home care nurse from a bad one? How would we monitor the care to ensure it was of high quality? What could we have done if poor care was provided?

The nurses told us we would have to raise our questions with the doctors. Yet they seemed to be avoiding us. We called the lead physician’s office many times and received no response. We even arrived very early (before 7:00 a.m.) to catch that physician on his rounds; he had “just left.” The few communications we did have with doctors were inconsistent and conflicting. The pulmonologist said Mom had 24–48 hours left. The nurses said she was looking better. An internist said she would be home in two days and a psychiatrist just appeared regularly to yell (literally): “Olive, do you know where you are? Can you spell your name?” I interrogated the cardiology nurse. She would not give a prognosis, so I asked “Was there tissue damage?” She said “Yes.” I said “Was it a minor heart attack?” She said “No.” I said “Was the damage was pretty significant?” She said “Yes.” I looked at Mom and thought that she did not look good at all. While she might have been more awake on the second day, she was fighting for air; her chest and abdomen going up and down. I could not see how she was getting better. How could I get a straight answer [2]? How could I take definitive action when I received conflicting advice and my own common sense told me that I was not getting a straight story? How could I get the doctors and nurses to talk to me? Who could I call if they don’t? Who was in charge?

It was difficult for us to know whether our mother’s condition was due to her disease or her treatment. Mom was clearly out of it. But she was on Haldol, which she had waited several hours to get while the staff attended to another emergency and while she was fighting her restraints. The nursing staff reported that the Haldol helped Mom quiet down. But when I first saw her, her speech was slurred and she looked awful. How could I know whether it was the Haldol or the heart attack or the lack of oxygen to the brain caused by pneumonia? No one would talk with us!

I kept asking myself: “What does Mom want?” Does she want to die? Mom was awake. I could have asked her. But how? Do I say: “Mom, do you want to die?” Or “Have you had enough?” I wanted to approach this the right way, but how do I open the discussion? AND, suppose she had said “Yes!” Then what? What could we have done to help her along?

Was it time to talk to hospice? The community offered several hospice options. Which one should we talk to? How could we find the best one? Was she eligible to go? What would they do for her? If hospice was available, it might be another difficult transition for Mom. I just wanted to ease her misery.

Training medical professionals on the dying process

The death and dying process, including the needs of family members, should have a significant place in the training of physicians and nurses. But when I asked the nurse in charge of the ICU whether the hospital had a palliative care program, she replied: “What is that?” After we complained several times that we could not reach the physician, a “case manager” appeared, asking: “What do you want?” But we did not know what we wanted! She gave a list with telephone numbers of nursing homes and hospices but would not identify the good ones. When we asked whether the good ones were full and all the bad ones empty, she avoided the question. Again, there were so many unanswered questions. How could we get Mom into a nursing home or hospice that would be nice to her? How would we know if they were giving good care? How could we intervene if they weren’t? Time was getting short. We needed answers.I wish that I could be optimistic that things will be better. I am not. The health field has recommended an array of end-of-life policies and best practices [3-6]. The Institute of Medicine and major provider associations, have issued reports, studies, and calls for change. The Robert Wood Johnson Foundation invested millions of dollars to promote a good death. But little has changed. The health care field is full of studies showing that patients’ wishes are not respected [7], that communication in the ICU is sorely lacking [8]; that evidence-based practices are not implemented [9]; and that fundamental concepts of palliative care (and even decency) are absent in many health care organizations [10].

Providers (and consumers) need to be more comfortable with uncertainty and with death. Long ago, Larry Weed (developer of the problem oriented medical record and Problem Knowledge Couplers) warned that it was not practical to expect a doctor to store and effectively process the vast and rapidly growing base of medical knowledge. In many cases, health care providers just don’t know how bad things are or the best course of action for a patient. So it is reasonable for a doctor to express uncertainty about what to do or whether the situation is dire enough to call the family together. But many providers act as if death is a failure, when it is part of life [11]. All patients and families deserve honest and consistent information, even if the information is an expression of uncertainty.

Healthcare providers are good people. I have seen my sister, a critical care nurse, come home from her job at a leading teaching hospital so tired she can barely move. I have seen doctors so frustrated with the health system that they can barely see straight. Providers are trained to cure at all costs but the incentives are to ensure that they spend as little time a possible with individual patients. I have seen hospital administrators after another long night of worrying on how they will make budget. If I were in their shoes with the same pressures and incentives, I would probably do the same thing. It should be different but it won’t; not for a long time. The problem is the system, not the people.

In the final analysis it is up to us (the families) to take more responsibility for the dying person and for ourselves [12]. We are the ones who care the most about what happens. We are the ones that will make the time. We need to know what to look for and what to expect. We need to know how to care for a patient at the end of life. We need to know our rights and how to exercise them; our options and how to choose between them. We need to know how to assess quality and how to act on those assessments. And we need to understand that death is part of life and that uncertainty is part of the dying process [13].

Ideally, families should be prepared to deal with death and dying well before the event. But it doesn’t work that way. I have done health services research for over 30 years. I currently have two research grants on death and dying. I knew my mother was approaching the end of her life. I should have been prepared for her death. I wasn’t. I was powerless when it came to making things happen in the ICU. I knew the principles but not the specifics of how to interact with a dying patient, and I needed the specifics. Our family (those in the ICU and those far away) needed ready access to information on Mom’s status as well as easy-to-find, easy-to-apply, just-in-time training on death and dying; training that was accessible while we sat in the intensive care unit and included the specific signs to look for and specific words to use with patients and providers.

Reccomendations

I have three suggestions: 1) automate the processes for helping patients and families deal with dying and death, 2) when automation is out of the question, make it hard for ICUs to do the wrong thing, and 3) improve transparency of how healthcare deals with death and dying.

Automate

Given the pressures that health care providers operate under, it is unrealistic to expect training and exhortation to change anything. Technologies are needed that equip patients and families to deal with death and dying. Things would have been so much better if I could have opened my smart phone and pulled up a list of the 20 things to watch for in the ICU: things like restraints, conflicting information, care contrary to patient wishes, goals for end of life, family-physician communication. If I could have selected one of those things on my smart phone and seen an overview of the issues, my rights, specific steps I could take. If I could clicked on a topic and received more detail through decision aids, scripts, assessments, and training on how to exercise my rights, all presented in way that I could apply on the spot. If I could have had immediate Web access to databases on ICU, hospice and nursing home quality and relevant literature. If I could have sent a text message to an expert in death and dying or seen video clips of an effective encounter with a patient, a family member, a nurse, doctor or administrator. If I could have asked a question of other families who had gone through something similar or read stories of their experiences. The reality is that I could have—the technology, the knowledge, and the data exist to deal with most of these issues.

My wife and I just completed our Health Care Power of Attorney documents and sat down with the kids to review them. I wish that I could have handed the kids a memory stick containing that information, reviewed the basic structure with them, and asked them to carry it with them, because some day (5, 10, 30 years from now—or maybe tomorrow) they will need it, and so will I. Research and development could make this kind of tool a reality. But we can’t stop with development. We need to have a system for dissemination. Partnerships with the legal profession could ensure that when a will is prepared or updated that the participants and their families be given access to these tools. Hospitals could make this technology available to families whenever a patient is admitted to intensive care.

Secondly, electronic medical records (EMRs) could improve end of life. Is it out of the question to give families access to the medical record during this difficult time? Could EMRs place the patient’s goals for end of life care in an easy to access location that would be hard for any provider to miss? Could EMR’s have reminder systems that would alert providers when it is time to encourage patients to update their end of life wishes? Whenever a patient is considered to have a potentially life-threatening condition, could the EMR require documentation from ICU clinicians indicating that they have read and accept the patient’s goals for care at end of life?

Make it hard to do the wrong thing

Systems change can be difficult. However, there are principles that can increase the likelihood of success. One is to remove the status quo. For instance, one cannot use mechanical restraints if they are not available. Administration could remove the mechanical restraints from the ICU and lock them in a cabinet for use only with permission of senior leaders. Medicare could treat inappropriate care at the end of life in the same way they treat other medical errors. Medicare policy could just flat out prohibit the use of mechanical restraints without permission from a senior leader of the hospital. Then, immediate convening of a rapid response team could be required to determine steps needed to remove the restraints and make sure they are never needed again. These steps have already been taken by mental health hospitals; we could do the same for dying patients. Technology could help to ensure that these policies are implemented.

Transparency

Public reporting on the quality of a death should be required. Organizations like Medicare and NCQA could collect and publicly report data on use of restraints and other measurable dimensions of quality in death and dying. But public reporting is just a start. Systems must be in place to ensure that people will actually act on this information. Given our reticence to address death and dying before it happens, it is unrealistic to expect families to study quality of death data until the time comes. Hence, it will be important to find ways to make these data and resources easily available, easily understandable and easy to act on in a just-in-time basis.

We (the patients and families) need to take responsibility for our own dying and death. It is the centerpiece for us being able to do that. Mom needed it, I needed it and so will you.

References

1. Field M, Cassell C. Approaching death: improving care at the end of life. (IOM Report) Washington DC: National Academy Press; 1997.

2. Kirchhoff KT, Spuhler V, Walker L, Hutton A, Cole BV, Clemmer T. Intensive care nurses experiences with end of life care. Am J Crit Care 2000;9:36-42. [Medline]

3. Kirchhoff KT. Promoting a peaceful death in the ICU. Crit Care Nurs Clin North Am 2002 Jun;14(2):201-206. [Medline] [CrossRef]

4. Jackson I. Bereavement follow-up support in intensive care units. Intensive Crit Care Nsg 1992;8(3):163-168. [CrossRef]

5. American Medical Association. Education for physicians on end of life care (EPERC). 1999.   URL: http://www.epec.net/EPEC/Webpages/ph.cfm [WebCite Cache]

6. Curtis JR, Patrick DL, Shannon SE, Treece PD, Engelberg RA, Rubenfeld GD. The family conference as a focus to improve communication about end-of-life care in the intensive care unit: opportunities for improvement. Crit Care Med 2001 Feb;29(2 Suppl) N26-33. [Medline] [CrossRef]

7. Lynn J, Teno JM, Phillips RS, Wu AW, Desbiens N, Harrold J, et al. Perceptions by family members of the dying experience of older and seriously ill patients. SUPPORT Investigators. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments. Ann Intern Med 1997 Jan 15;126(2):97-106 [FREE Full text] [Medline]

8. Kirchhoff KT, Walker L, Hutton A, Spuhler V, Cole BV, Clemmer T. The vortex: families’ experiences with death in the intensive care unit. Am J Crit Care 2002 May;11(3):200-209. [Medline]

9. McGlynn EA, Asch SM, Adams J, Keesey J, Hicks J, DeCristofaro A, et al. The quality of health care delivered to adults in the United States. New Engl J Med 2003;26:2635-2645. [Medline]

10. Jacobson JA, Francis LP, Battin MP, Green GJ, Grammes C, Vanriper J, et al. Dialogue to action: lessons learned from some family members of deceased patients at an interactive program in seven Utah hospitals. J Clin Ethics 1997;8(4):359-371. [Medline]

11. Asch DA, Hansen-Flaschen J, Lanken PN. Decisions to limit or continue life-sustaining treatment by critical care physicians in the United States: conflicts between physicians’ practices and patients’ wishes. Am J Respir Crit Care Med 1995 Feb;151(2 Pt 1):288-292. [Medline]

12. Parker L. In a crisis do-not-revive requests do not always work. USA Today 2006 Dec 20.

13. Gross J. For families of the dying, coaching as the hours wane. New York Times 2006 May 20.

CITE:

Gustafson DH
A Good Death
J Med Internet Res 2007;9(1):e6
URL: http://www.jmir.org/2007/1/e6/
doi: 10.2196/jmir.9.1.e6
PMID: 17478415

(photo: Roger Smith)

Guest Post by Kathy S.

Whatever their age, I don’t think we are ever prepared for the loss of a parent.  Parents are our world until we can take care of ourselves and they continue to help us throughout our lives. When my mom became terminally ill and she found it difficult to care for herself, we needed to make many important decisions. If I can help anyone through this process, it will be worth the sharing of my experience.

When your parent is beginning the journey to the end of their life, you can help them make this transition.  At first, it is important to ask your parent’s personal physician to clarify the prognosis. If your parent has a terminal illness, defining a timeline helps all of those caring for them. As an adult child and caretaker, you can begin to adjust your outside commitments and process what is going to happen.

Taking a Leave of Absence

If you only have a few months to say goodbye, it is an added strain to deal with all of the complicated decisions while coping with the shock of the news. In these cases, you may need to move quickly to help your parent with decision making. Taking leave from a job is a good idea if it is possible. If an extended leave isn’t possible, one or two days every few weeks will help you to process the events and allow you to spend concentrated time with your parent. It will also decrease your stress level. Most importantly, it will ease your parent’s mind to know that you are there for them.

Changing Health Conditions

One of the signs you will notice as a parent becomes frailer is a change in their ability to care for themselves. My mom began eating less, sleeping more and moving around more slowly. Her illness and medication kept her off balance and at times created confusion for her. I think we go into denial during these events; it is the way our minds work to protect us. When my mom phoned at 2 a.m. to say she was not able to get back to bed, we knew her illness was progressing.

Making Living Arrangements

It was clear she needed our help and it was time to make a plan. My mother didn’t want to go to a nursing home, and we honored her decision. In this case, you can access nursing care as part of Medicare homecare. Friends and other relatives were also willing to sit for a few hours. Our mother-in-law really felt good that we asked her to make regular visits. Others—who will feel as helpless as you—will be glad to have something concrete to “do” that will help your parent. Don’t be afraid to delegate responsibilities or ask for help when needed. The combination of my brother and I staying with Mom at night (to ensure she was safe and comfortable) and these daytime visitors and caretakers worked well.The loving care provided by children, friends and relatives can be arranged as a weekly plan, and with a terminal illness, is a temporary situation.

Saying Goodbye

During this time, it is a good idea to tell your parent how much you appreciate all that they have done for you.  The memory of these conversations will bring you comfort long after your parent passes away. As your parent grows weaker but is still able to talk, you can gather everyone around so they may tell your parent how much they love them. You may be surprised how much your parent will appreciate these words. Taking one day at a time, we do the best we can when we bravely take on end-of-life issues for the love of a parent.

(photo: MagdaMontemor)