Embracing Death for Ourselves and Our Patients

I have the honor of having an essay of mine published on NurseTogether today.

“I want to celebrate my belief that living well and dying well are one and the same thing. I’m not talking about adjusting deathbed pillows so that the dying people can strike heroic poses for the edification of onlookers. I’m talking about achieving a good death in the context of real dying – with all its unpredictability, disfigurement, pain, and sorrow.”

My name is Richard. I’m the founder of PARADIGM/Enhancing Life Near Death, a nonprofit organization with an outreach to terminally ill, seriously ill, elder, and dying people. I’m also the author of the newly published The Amateur’s Guide To Death And Dying. I’ve been invited to share some thoughts with you about my personal journey on patient deaths.

Although I’ve been working in this field for 30 years, I should probably say from the onset that witnessing patient deaths is not something I chose to do. It was more like this work chose me. Let me explain.

I finished my doctorate in San Francisco in 1981. That same year a mysterious thing began to happen. Gay men all across the country began to sicken and die from an unknown disease. Was this a diabolic plot of some kind? Perhaps it was divine retribution. Or was this simply a very serious medical emergency? The AIDS crisis had begun in earnest.

Because of my background in religion and psychology, friends turned to me for guidance, but I’m afraid that I had nothing to offer them. Nothing, in all my years of schooling, had prepared me for what was happening to the people I loved. I was petrified. All my greatest fears were being realized. What did it all mean? It was a desperate time and I was powerless. I could do nothing but sit and watch the nightmare unfold.

As it turned out, sitting and watching was the best thing I could have done, because as fate would have it, this time I was to be the student, not the teacher. In time, I became less anxious. The monstrous thing I feared for so long was being transformed. I was able to sit with death and not be afraid. Death was no longer the enemy, she had become what St. Francis called her, ‘sister death.’

Years of going from one death scene to another with hardly a break in between was exhausting but also rewarding. I began to see patterns develop. Despite the uniqueness of each death, I noticed there were two things all these deaths had in common. They were difficult and lonely affairs.

Difficult because in this culture we have a hard time recognizing when things are over, especially the things we enjoy – summer vacation, relationships, our youth and even life itself. This is a problem because being unable to acknowledge the end of something makes saying goodbye and thank you impossible.

And they were also lonely affairs, because the wisdom people come as they approached the end of their life often died with them. There simply wasn’t a medium for collecting this abundant wisdom and thus it was frequently lost.

Most people face their mortality in a vacuum of information and support. It is as if each of will have to learn to die from scratch, as if no one had died before us.

I figured there had to be a better way to deal with this fundamental fact of life. That’s why I’m here. I want to take a fresh look at my mortality, and do so in an interactive and positive way.

I look forward to other opportunities to address the topic of patient deaths and even dying as a personal issue in the weeks to come. Thank you for this opportunity to join you.

Complete Article HERE!

End-of-Life Care Should Be Universally Provided and Need-Based

By James Hamblin, MD

Dr. Ezekiel Emanuel, oncologist and chair of the Department of Bioethics at the National Institutes of Health (and, entirely incidentally, brother to Rahm and Ari Emanuel) has long been a champion of end-of-life care. He spoke today with Corby Kummer at The Atlantic’s Washington Ideas Forum, where he made succinct points about strategies for systematic improvements in our approach to caring for those nearest to death.

First, all doctors and nurses should be formally trained in end-of-life care and discussions. Walking into a room with a patient and their family to discuss a terminal diagnosis or prognosis is — especially at first — overwhelming, and impossible to just know how to do. Emanuel admits that facing those situations remains “scary,” even as a veteran clinician. He and most of his generation of physicians never received formal training in how to best discuss terminal illness with patients and offer palliative options, and some in training today still do not. Considering the large number of people who eventually face death, it is unreasonable that not all doctors and nurses are thoroughly prepared to help them as they do.

Emanuel also cited that more than 40 percent of hospitals in the U.S. do not offer access to palliative care, either within the hospital or after a patient has been discharged home. He believes that hospitals should be required to at least offer the option.

And finally, at present, eligibility for hospice care is predicated on having six months to live. Emanuel sees access to hospice as more aptly need-based, not calendar-based. Patients with symptoms warranting palliation, regardless of the estimated length of their remaining life, should be standardly offered care in that vein.

All of these changes would come as part of an ongoing shift in psychology and broader openness about death. Emanuel is quick to add the caveat that he is not talking about euthanasia or [shudder] … “death panels.” His inclination toward explicit clarification on that point stems from accusations that he and other leaders in the realm of end-of-life care have endured in the past. The fact that he still needs to make that clarification speaks to the persistent widespread misunderstanding surrounding quality end-of-life care. That mindset is and will remain the primary barrier to seeing these improvements out.

Complete Article HERE!

Doctors criticise religious parents for prolonging treatment

RELIGIOUS parents of seriously ill children who expect miraculous intervention are challenging the withdrawal of therapies that medical professionals consider to be “aggressive”, “futile and burdensome”, a paper published in the current issue of the Journal of Medical Ethics suggests.

The authors of the article – “Should religious beliefs be allowed to stonewall a secular approach to withdrawing and witholding treatment in children?”- argue that, in place of protracted dialogue between parents and professionals, during which a child might be subject to pain and discomfort, it would be better to have a “default position” whereby the case is taken to court.

Dr Joe Brierley and Dr Andy Petros, both consultants at the Paediatric and Neonatal Intensive Care Unit at Great Ormond Street Hospital for Children, and the chaplain of the hospital, the Revd Jim Linthicum, reviewed 203 cases at the unit over a three-year period, where withdrawal or limitation of invasive care was recommended by the medical team.

While in the majority of cases parents agreed to withdrawal or limitation, in 17 cases “extended discussions” between parents and medical teams did not lead to a resolution. Of these, 11 involved “explicit religious claims that intensive care should not be stopped due to the expectation of divine intervention and complete cure together with the conviction that overly pessimistic medical predictions were wrong”.

Of the 11 cases, five – involving Muslim, Jewish, and Roman Catholic parents – were resolved after meeting religious leaders; one child had intensive care withdrawn after a High Court Order; and in the remaining five, all involving Christian parents, most from “Christian fundamentalist churches with African evangelical origins”, no resolution was possible, owing to “expressed expectations that a ‘miracle’ would happen”.

The authors report that the Christian parents who “held fervent or fundamentalist views” did not engage in exploration of their religious beliefs with hospital chaplains, and that no religious community leaders were available to attend discussions.

Of the total number of 17 cases where there difficulties with finding a resolution, 14 of the children died soon after intensive care was withdrawn; one died within a week of withdrawal; and two survived with “profound residual neurodisability”.

While the authors acknowledge that it is “completely understandable” that some parents oppose withdrawal of support, they call for a “different approach”, citing “considerable stress, tension and conflict” for parents and staff.

The paper argues that while “any solution should allow due deference to a family’s beliefs and shared involvement in decision-making”, the religion of parents “should not influence the management of their child”. It cites the example of giving the children of Jehovah Witnesses blood transfusions and also Article 3 of the Human Rights Act, which states that “no one shall be subjected to torture or to inhumane or degrading treatment or punishment”.

The argument of the paper is challenged in four commentaries also published in the Journal of Medical Ethics. They were commissioned by the journal, and appear alongside the article.

Professor Julian Savulescu, the journal’s editor, argues that: “Treatment limitation decisions are best made, not in the alleged interests of patients, but on distributive justice grounds.”

He suggests that, while it is difficult to say when a human being’s life is worse than death for that individual, “it is much more tractable to decide when one life is better than another and when one life is more worth saving.” In a publicly funded system with limited resources, these should be given to those whose lives could be saved rather than to those who are very unlikely to survive, he argues.

Dr Steve Clarke of the Institute for Science and Ethics argues that the comparison with Jehovah’s Witnesses opposing blood tranfusions does not stand up: belief in miracles is widespread, and opposing withdrawal of treatment in the hope of a miracle cannot be said to be against a child’s best interests. He cites “significant scholarly arguments for the conclusion that miracles are possible”, and suggests that doctors should engage with devout parents on their own terms.

“Devout parents, who are hoping for a miracle, may be able to be persuaded, by the lights of their own personal . . . religious beliefs, that waiting indefinite periods of time for a miracle to occur while a child is suffering, and while scarce medical equipment is being denied to other children, is not the right thing to do,” Dr Clarke writes.

Dr Mark Sheehan, an Ethics Fellow at the University of Oxford, describes religion as discussed in the paper as a “red herring”. There are, he argues, “other things going on in these cases”, and they would be better resolved by being interpreted accordingly, with a focus on “the well-articulated ethical reasons that apply to all”.

Charles Foster, from Green Templeton College at the University of Oxford, suggests that English law, in which the child’s best interests are paramount, is already adequate to the challenge posed by the cases described in the paper. He also argues that these interests cannot be judged only according to medical criteria, but as a “holistic exercise”.

He is critical of the assumption that “there is some sort of democratically ordained mandate to impose secular values on everyone.” He suggests that a parent’s refusal to withdraw treatment from a child is something that “a truly secular society, rejoicing in diversity, should be keen to respect, as long as it is consistent with the best interests of the child, as broadly viewed.”

Complete Article HERE!

Take Control Of Life, Death

By Dr. Aroop Mangalik

If you want to be comfortable, happy and be with your family and friends when you are facing a serious illness or are likely to die in the near future, you need to take control.

In recent decades, there has been what some have called “medicalization of death.” There have been many advances in medicine and a lot of people are living healthier, longer lives.

But ultimately, we all have to die.

Medicalization of death has occurred, to a significant degree, because we – society, patients and doctors – have not taken into account the fact that there are limits to life and that medical interventions can only do so much.

Understanding this reality is a major step that must be taken to get the best outcome for the patient.

How does one understand this? How do we take control of the situation?

The knowledge you need to get will necessarily come from your medical provider. The best decisions are made by having the facts – available treatment options and the likely outcomes.

Ask your provider about the nature of the illness and what is expected without any treatment.

The next steps will be to get a clear picture of what treatments are available. You should be able to get some idea of how likely it is that the treatments will improve the outcome for you.

This includes information on previous success and failures with available options. At least try to find out if the treatment is “very likely,” “likely,” or “not likely” to help.

Equally, important, you need to know what will be the side-effects of treatment. Will the treatments be harsh or mild, will they last for a short time or will they be persistent.

The cost in dollars is also something that must be considered. In this day of uncertainty we cannot ignore that factor. Many families face bankruptcy because of “long shot” medical treatments.

Once you have the information, you need to decide. It should be your decision based on the best information and input you can get.

If you feel that the treatments available to you are not going to help you achieve your goals, you can refuse those treatments. No one can force you to have a treatment you do not want.

If you choose the path of not taking the treatment, the focus changes from controlling the disease to making your life as comfortable as possible.

The medical team will work with you to control your symptoms. They will help you with pain control, nausea, vomiting, shortness of breath or difficulties in performing day-to-day activities. They will work with you to get the best out of life for whatever time you are alive.

There are many types of experts who are trained to help you. They have overlapping roles and expertise and they work together.

They are referred to as Palliative Care Specialists, Hospice Teams or Symptom Management experts. They all have the goals of making your life better and focus on you.

They also help you and your family so that you die comfortably and with dignity with your family and friends around you.

In certain circumstances, despite their efforts, living may feel like a burden. There are other options that can be utilized.

This is the option of you willfully ending your life at the time you choose. This option has been given a number of names. Physician-assisted death (and) assisted suicide being two common ones.

The option is currently available in Oregon and Washington State. In New Mexico, we are waiting for the courts to decide if such an action would be legal.

In summary, when faced with a serious illness, you should take control of your life and decide what is best for you.

Complete Article HERE!

A 56-Year-Old Physician Who Underwent a PSA Test

Six years ago, after celebrating my 50th birthday, I chose to begin an annual ritual of having my prostate-specific antigen (PSA) level checked. I have been a practicing academic oncologist with a clinical practice that is devoted exclusively to prostate cancer for 25 years. I also have a PhD in health policy. My dissertation found that older men who are diagnosed as having prostate cancer are less likely to have complete staging evaluations and are also less likely to undergo a prostatectomy or radiation therapy as treatment.

At that time, my PSA level was 1.5 ng/mL (to convert to micrograms per liter, multiply by 1.0), raising some concern. One year later, I had my PSA level checked again; it was 2.5 ng/mL. I met with a urologist, a faculty colleague with whom I had collaborated on research, and requested a biopsy, which was performed 6 weeks later. I was anxious: did I have cancer? If so, what was my Gleason grade? How much tumor? I had treated hundreds of patients with prostate cancer and had seen thousands of prostate biopsy specimens, but now this was my biopsy. Two days later, I called the pathologist, another faculty colleague, anxious to hear the results. The slides had just finished processing. Would I want to look at the slides myself? I ran downstairs, sat at the microscope table with my friend, and together we were the first to see the cancer. Gleason 3 + 3 in 1 of 12 biopsy specimens, 5% of the gland, and no evidence of lymphatic, seminal vesicle, or extraprostatic involvement.

Now, what do I do? I had counseled hundreds of men with similar biopsy results. Most of the men my age had opted for surgery, a small number opted for radiation therapy, and a smaller number chose active surveillance. I chose to be an informed patient and got an opinion from leading medical, surgical, and radiation oncologists throughout the country. In the end, I decided to undergo a radical prostatectomy. My selected urologist was a national leader. I came away from a discussion with him believing that a prostatectomy, performed by him on a healthy person like me, would have an extremely low risk of sexual, bladder, or bowel dysfunction and 100% 20-year prostate cancer–specific survival. I chose surgery, viewing the risks as small and the benefits as great.

Fast forward 5 years: cancer free. However, as a result of the surgery, my right arm and right leg are permanently weak, with this deficit appearing immediately after surgery. The reasons for this outcome are unclear. My PSA level remains 0, but my daily 5-mile jog is no longer possible.

Where am I now on the PSA dilemma in light of the recent US Preventive Services Task Force recommendations? It is clear that prostatectomy results in a very high chance of 20-year prostate cancer–specific survival, but even when the procedure is performed by an expert urologist, it can also result in significant rates of sexual, bladder, and bowel dysfunction and other less common adverse effects, such as my weakness. Active surveillance with longitudinal PSA tests and physical examination is associated with very low rates of bowel, bladder, and sexual dysfunction and has a high probability of correctly identifying when to move from surveillance to treatment. If I could do it all over again, I would not undergo the surgery; instead, I would opt for active surveillance. Even the most informed patient (me in this case) has difficulty making a truly informed decision.

Complete Article HERE!

Checklist approach to be tested in end-of-life care planning

Researchers from Harvard Medical School soon will begin testing a checklist-style approach to helping cancer patients get the kind of end-of-life care they want. The plans, detailed in June at a meeting of the International Society of Advance Care Planning and End of Life Care, are aimed at helping oncologists discuss end-of-life care issues with patients at an earlier stage in the disease process.

The trial of the serious illness communication checklist will involve 60 practicing oncologists and begin enrolling 450 patients in June. Data on patient and family satisfaction and treatment choices will be collected over three years, researchers said.

A wide body of research has found that patients who plan ahead are likelier to get the treatments they want as they near death. These patients tend to get less-aggressive care, earlier referral to hospice, are more satisfied with their care and see lower burdens placed on family members, experts say. Yet fewer than one in three Americans has a living will, and only half of U.S. patients with terminal illnesses have such directives documented in their medical records, according to the Agency for Healthcare Research and Quality.

Nearly 90% of patients with cancer have documented end-of-life care discussions with their physicians, said a study of about 2,200 patients in Los Angeles and Toronto published in the Feb. 7 Annals of Internal Medicine (ncbi.nlm.nih.gov/pubmed/22312140/). But most of the talks happened in the hospital less than five weeks before death and were with physicians other than the patient’s oncologist.

“I always think about this idea that it’s too early until it’s too late,” said Susan D. Block, MD, principal investigator of the serious illness communication checklist study. “In medicine, in general, these conversations take place way too late. There are lots of excuses on everybody’s side about that, but it needs to change.”

Oncologists participating in the trial will undergo a 2½-hour training session on how to use the checklist. They can have nurse practitioners join them for the training and help carry out the conversations with patients, which can take 25 to 40 minutes. The checklist asks patients who are estimated to have less than a year to live to discuss:

Their understanding of the prognosis.

  • How much information they want shared with loved ones.
  • Their goals of care, should their health seriously worsen.
  • Their biggest fears and what functional abilities they could not imagine living without.
  • How much medical intervention they are willing to undergo to gain more time.
  • How much they want family members to know about their priorities and wishes.

Talk focused on patient’s values
“We need to ask the right questions,” said Dr. Block, chair of the Dept. of Psychosocial Oncology and Palliative Care at Dana-Farber Cancer Institute in Boston. “Instead of focusing on procedures, we need to be focusing on goals, values, fears, quality of life, suffering and survival. Those are the things that matter to patients.”

The last step in the checklist is documentation, which integrates the patient’s answers — and any updates — into the electronic health record. The checklist has been piloted and fine-tuned during the last year, said Dr. Block, professor of psychiatry and medicine at Harvard Medical School. An abstract of her talk was published in the June issue of BMJ Supportive & Palliative Care (spcare.bmj.com/content/2/2/187.2.abstract).

Dr. Block was prompted to think about formulating the serious illness communication checklist by colleague Atul Gawande, MD, a professor of surgery at Harvard Medical School and author of The Checklist Manifesto: How to Get Things Right. Dr. Gawande, co-principal investigator of the study, had to overcome Dr. Block’s initial hesitation.

“I was very dubious,” she said in her presentation. “It seemed mechanical and reductionistic and cold to me, but I’ve warmed up to it. … I’m intrigued, in my mind, by this paradox — that something as routinized as a checklist could help with a conversation so deep and profound and complicated. It has some interesting potential, and we’re going to find out whether it works.”

Other presentations at the three-day conference focused on the challenges involved in advance care planning with racial and ethnic minorities, patients with disabilities and adolescents. Physicians, social workers, chaplains and other health professionals from Japan, Singapore, New Zealand, Australia and Canada presented information about end-of-life care planning initiatives in their countries.

Complete Article HERE!

Burdening families with CPR decisions in the face of futility is cruel

by MONICA WILLIAMS-MURPHY, MD

Those who know and work with me have heard me state without hesitation that it’s morally wrong to do CPR on 90-year old great grandmas. So, it was with great relief that I read the “Do Not Offer CPR” option in a recent JAMA article urging a revision of our present approach to the use of CPR for those who are unarguably at the end of life.

This is a change from the present expectation of CPR no matter what, to a set of recommendations that incorporates the question of whether CPR “harms or helps” individuals. Finally, some sanity.

Medicine attempts to balance patient autonomy with the grand directive: “First, do no harm.” Recently, I have also discovered that as a doctor, it is also my job “to do no harm” to the families and surrogate decision makers of those in my care.

Last week, I learned that even asking families to make CPR or DNR decisions in the face of almost certain death creates unnecessary harm for them as well. In the following case, I created a decision-burden for a family that they neither wanted, needed, nor could handle—a decision-burden that would not change the outcome (death), yet would likely trouble them for the rest of their lives.

This case drove home to me another compelling reason why CPR should not be offered to those who are imminently dying: not only does the act of CPR harm the dying patient, the actual act of asking the families to make futile CPR vs DNR decisions harms them as well.

Mr. Gray was an 80-year old great-grandfather of 12. For years he had taken a blood thinner for his heart condition, without any complications, until 3 days before I saw him.

3 days prior, he had fallen and hit his head, developing a large bruise across his forehead. Despite his family’s urging, he had not gone to a doctor to get it checked out. Instead, he went about his daily activities, bothered only by a mild headache. This headache suddenly became severe on the 3rd day and he began to vomit. Immediately after vomiting, he became confused.

No more messing around, the family called 911. Mr. Gray was now too confused to argue or refuse a medical evaluation.

EMS loaded him up easily enough though, and told the family to follow them for what would be a short ride to the hospital. The ride was short enough, but something terrible happened during the transport-Mr. Gray fell unconscious and stopped breathing.

What ensued on arrival to my ER was high-end aggressive emergency care: he was intubated, placed on a ventilator, we placed multiple IVs, gave mannitol, ordered emergency plasma and ran with Mr. Gray to the Cat Scanner, all within minutes.

I tapped my foot impatiently awaiting the images of his brain to load up on the computer.

“Darn it,” I muttered when I saw the pictures confirming what I had already clinically diagnosed and begun treating. A large hematoma had developed on his brain. According to the radiologist there were already signs that his brain was herniating.

Just then, I got a call from the lab. Mr. Gray’s blood thinner levels were toxic. It would take hours to correct this before Mr. Gray could even go to surgery, and what Mr. Gray did not have was hours to wait. What he did have was a large, loving and very concerned family whom I had yet to talk to in detail.

I spoke with the neurosurgeon before I gathered this family. The specialists said that due to the blood thinner toxicity, the delay would most likely make the injury unsurvivable — meaning, we expected him to die.

I let out a long sigh and said, “Yeah, that’s what I thought.”

Hanging up the phone, I braced myself to talk to the family.

When I walked into the family waiting area it seemed to be standing room only. I asked those who could to take a seat. Sitting or standing, everyone leaned forward, anxiously, with expressions mixing dread with hope.

No matter how many times one has done this, these conversations are never easy. First, I gave the general explanation of what had occurred and how bad things looked for Mr. Gray. I explained that surgery to remove the hematoma could not be performed until the blood thinner problem was corrected and that this wait would most likely prove to be “too long” for him.

Tears began to flow. Children grabbed the hands of parents and siblings looked at each other in shock.

Next, I outlined all of the “doctor-driven” decisions that would be made and explained possible outcomes. If A happens then we can do B, but if C happens then B is not an option.

Then, finally, I laid the most serious decisions on them. How would Mr. Gray die, when his time comes? Would they allow natural death by withholding CPR? Would they request an attempt at CPR? Finally, would they consider withdrawing artificial life support measures.

Already grief-stricken, I watched their eyes glaze over in fear and pain as I gave them these final options and explained that eventually we would need to have a family decision on these choices (in the absence of a pre-selected decision maker to speak for Mr. Gray).
Looking around the room at heads hung low, there was deep silence. I stared at my feet, not looking at them in an attempt to give them space for thought.

But in that quiet moment, something shifted within me. I began to feel ashamed that I had even asked such questions at all. In that moment, I began to understand that the burden I had given them was too great and complex. I was asking them to participate in choosing his death, a task that they clearly did not want- something they obviously had never discussed. And, saddest of all, after pressuring them for an answer, this answer was not going to change the outcome for Mr. Gray-he was still probably going to die and all that they would have gained from this situation is a persistent guilt burden about whether they made the right choice or not.

Suddenly, it became so clear to me that this should not even be their burden at all. In that moment, I grew to understand that it was wrong to even ask families to make such decisions in futile circumstances – that should be my job. I should be the one who guides them through this time by saying, “CPR will not bring him back to who he was, it will not help him, it would only cause us to do further damage to his dying body. Because of this, we will not perform CPR on Mr. Gray when his heart stops, but we will care for him in every other way. We will make sure that he is comfortable and that you are with him. Now is your time to say, ‘Thank you, I love you, and good-bye.’”

I lifted my head. Looking around the room, I saw the strain on everyone’s faces and knew more than ever before that the way we practice end-of-life medicine must change.

Mr. Gray and his family, taught me first hand that it is cruel to burden families with CPR decisions in the face of futility. This type of decision-making should be built into medicine. It should be part of an end-of-life algorithm that is created and supported by the entire medical establishment for 3 reasons in addition to those cited in the JAMA article:

The maxim of “first, do no harm” should be extended to not just the patient, but also to the families of the dying patient in our care. We should not harm their emotional lives and consciences by asking them to make decisions about CPR that are ultimately futile. Such a burden is pointless and creates unnecessary suffering.

The Patient Self Determination Act of 1990 states that a patient or patient representative has the right to refuse or accept any medical procedures offered to them. This is the legislative back bone of modern concepts of patient autonomy. Presently, CPR is the default option and is therefore automatically offered by the medical system. But, as we learned from Mr. Gray and his family, there are times when this is inappropriate. I support the position of the JAMA article: “Physicians should not offer CPR to the patient who will die imminently or has no chance of surviving CPR to the point of leaving the hospital.” (Like Mr. Gray, whom we expected to die within 24 hours). Instead, we should spend our energies focusing the patient and families on creating comfort, peace, and closure with their remaining time together.

If the entire medical establishment agrees to create and adhere to guidelines outlining the exclusion criteria for CPR, like exclusion criteria for thrombolytics in stroke, then it cannot be argued that not offering CPR is a violation of patient autonomy. A patient or family cannot demand a procedure that is not offered when it is considered medically contraindicated.

In the end, it is we doctors who need to shoulder the burden of CPR decision making in futile situations. It is the burden for which we were trained, the years of experience caring for the dying, the hours of studying statistics and outcomes. We cannot in good conscience guide all other life-sustaining medical decisions then suddenly shift all death-determining medical decisions back to the family … it is a burden they are not equipped to bear and one they may never shed.

Complete Article HERE!