Institute of Medicine urges reforms to improve care for dying people

By Lisa M. Krieger

An influential national institute has prescribed a powerful cure for America’s approach to dying, saying that today’s health care system is ill-equipped to provide the comfort and care so cherished in our final days.

The long-awaited report released Wednesday by the Institute of Medicine recommends that regular end-of-life conversations become part of patients’ primary care, starting at age 18 and that doctors should be paid for time spent on these discussions — a controversial initiative eliminated from President Barack Obama’s health care law.

A medical bill, family photographs and belongings of Lisa Krieger’s late father Kenneth Harris Krieger.(Dai Sugano/Staff)
A medical bill, family photographs and belongings of Lisa Krieger’s late father Kenneth Harris Krieger.
The report reflects the growing concern over the dizzying array of high-tech interventions to emerge in recent years that prolong futile suffering, often at great emotional, physical and financial cost. Those interventions were the subject of this newspaper’s yearlong series “Cost of Dying.” To correct the current, misguided course, Medicare should boost coverage for home health services, not just high-tech hospital care, the report urges. And more doctors must be trained and licensed in end-of-life care, through changes in universities, state medical boards and accrediting agencies, it adds.

“Even though death is very much part of the cycle of life, thinking and talking about one’s own death usually remains in the background,” said Dr. Philip Pizzo, former dean of Stanford University’s School of Medicine and a co-chairman of the report.

“It is our hope,” said Pizzo, “that this report will lead to improvements in end-of-life care and the experience of dying for all.”

The 21-member committee, which included experts in law and medicine, devoted two years to studying federal policy, financing and hospital practices. Recommendations of the institute, a private, nonprofit arm of the National Academy of Sciences in Washington, D.C., often make their way into U.S. laws and federal agency policies.

The “Dying in America” report recommends that federal and state governments and private insurers create financial incentives for patients and clinicians to discuss end-of-life matters, document patient preferences, and provide appropriate services and care.

The report authors also suggest having initial conversations about end-of-life values, guided by a physician, at milestones of life, such as getting a driver’s license, turning 18, leaving home or marrying. Additional planning should occur for those in high-risk occupations, at the onset of chronic illness and when applying for Medicare.

“There is unnecessary and gratuitous suffering all over the place,” said Dr. BJ Miller, executive director at San Francisco’s Zen Hospice, who was not involved in the report. “But when the Institute of Medicine says something, people listen — at all levels,” said Miller, an assistant clinical professor of medicine at UCSF.

A Stanford end-of-life care expert said the report is ” relevant to persons who are seriously ill, their parents, children, extended families — which essentially means every American.”

“The timing of the report is exquisite, especially as the population of multiethnic older Americans is now exploding into a ‘silver-brown tsunami,’ ” said Dr. VJ Periyakoil, director of Palliative Care Education & Training at Stanford’s School of Medicine.

The 507-page report mirrors findings of this newspaper’s Cost of Dying series — posted at www.mercurynews.com/cost-of-dying. The series concluded with a story that prescribed ways to make end-of-life care more affordable and humane and led to community meetings throughout the Bay Area.

Data show that patients subjected to ineffective and burdensome high-tech treatments do not necessarily live a quality life longer — but instead suffer a prolonged dying. Such care is expensive and physically and emotionally hard on patients and their families.

But political controversy — and a human tendency to avoid thoughts of one’s own death — have derailed discussion of a profoundly important subject.

A 2009 provision of the Affordable Care Act to pay doctors for end-of-life counseling was labeled a “death panel” and never found its way into the law. A second attempt to authorize payment also was shelved.

The fee-for-service structure of the health care system is also to blame, the report concludes. “Perverse financial incentives” reward expensive high-tech and hospital procedures, rather than conversations, home health care and pain management.

The report was funded by a $1.5 million gift from an anonymous donor — who has also offered to fund a yearlong public education campaign.

“Most of us understand that we will die,” Miller said. “But we don’t know how to talk about it or what to do about it.”

ACTIONS

The Institute of Medicine makes five recommendations to lessen suffering at the end of life.

1. Cover comprehensive care for people with advanced serious illness nearing the end of life. 2. Develop concrete standards for doctors and patients to discuss and plan end of life care.
3. Set training, certification and license requirements to strengthen the knowledge and skills of all doctors who care for ill people nearing the end of life.
4. Integrate the financing of medical and social services to support quality care consistent with the values, goals and informed preferences of such people.
5. Widely provide fact-based information to encourage planning for the end of life and making informed choices.

Complete Article HERE!

How to help ensure you die on your own terms

By LISA ZAMOSKY

Earlier this year, Gary Spivack and his sister Betsy Goodkin lost their mother to cancer. Between her first diagnosis and her death in April, her children say, their mother was determined to overcome her illness.

Gary Spivack and his sister Betsy Goodkin

“She was a very stubborn and proud person who fought this and had a lot of support from immediate family and a lot of friends,” says Spivack, 49, a music industry executive who lives in Pacific Palisades.

“She was going to live out her final minutes as healthy and fighting it as much as she could,” adds Goodkin, 51, who describes herself as a “full-time mom” in the Cheviot Hills neighborhood of Los Angeles.

But even as their mother fought to stay alive and healthy, her children say, she made her end-of-life wishes known: If death was imminent, she wanted no heroic measures taken to save her life. And she insisted on dying at home.

They said their mother passed away April 13 in just the manner she had hoped: She was in her own bedroom with the lights low and the mood peaceful. She held hands with loved ones as she passed.

Dr. Neil Wenger, director of the UCLA Health Ethics Center, said most patients would prefer to die that way, but few actually do. That’s because they fail to put their final request in writing, he says.

Without advanced planning, he says, most people die in hospital intensive care units, “in not the most dignified circumstances, in a way most say they don’t want to die.”

Why the gap between what people say they want at the end of their lives and what actually happens? There are many reasons.

A recent study published in the American Journal of Preventive Medicine found that lack of awareness is the most common reason people cite for not having written instructions prepared in advance.

“People go into a mode of thinking — and are encouraged to — that ‘if I just apply enough technology I will survive it,'” says Barbara Coombs Lee, president of Denver group Compassion & Choices. They even continue “in that mode of thinking when it’s perfectly obvious they are actively dying.”

Doctors also avoid such talks. Some physicians incorrectly believe patients don’t want to discuss death. Others pass the buck, believing it’s some other doctor’s responsibility to have the discussion.

These talks take time and can be emotional. “Doctors are human and they bring to the table a lot of their own emotions about death and dying, and these can be very difficult conversations to have,” said Dr. Glenn Braunstein, vice president of clinical innovation at Cedars-Sinai Medical Center.

A report out last week by the Institute of Medicine stated that medical and nursing education fails to orient healthcare providers toward less aggressive forms of end-of-life care, and many providers simply lack the communication skills needed to have these conversations.

Also, the report noted, providers are still largely paid to deliver more services, rather than fewer — even when treatment is futile.

Experts offer recommendations for putting end-of-life plans in place and what needs to be considered.

Open up the lines of communication. Frequent conversations about end-of-life goals between doctors and patients are essential if unwanted treatment is to be avoided, experts say.

“When people fail to plan for the worst, often they find themselves in a struggle to avoid an imminent and inevitable death that ends up causing an enormous amount of suffering for them and for their family members,” Coombs Lee says.

“Anyone with a life-threatening disease should know their options and the efficacy rate of any treatment they are offered,” she says.

Insist on shared decision-making. End-of-life conversations should be part of shared decision-making between a patient and his or her doctor, Braunstein says.

“You take into account the patient’s preferences, their spirituality and a variety of things. At the same time the physician should be giving honest information about what the prognosis is, what we can do and what we can’t do,” he says.

Talk about comfort care: Conversations should include discussions about your various treatment options, including palliative care, which emphasizes a patient’s physical and emotional comfort. Braunstein said palliative care should start well before a patient is terminally ill.

Also important is to talk about hospice care — treatment when you are no longer attempting to prolong your life but rather focusing on staying comfortable and managing pain in your final days.

“We think of hospice care delivered in the home as the gold standard,” Coombs Lee says.

Research suggests that people who receive palliative and hospice care may live longer than ill patients who don’t.

Select an agent. It’s a good idea to name someone such as a family member or close friend to serve as your healthcare agent.

This should be the person you most trust to represent your best interests and who will make sure your wishes are respected and carried out. Your agent can’t be your doctor or other healthcare providers treating you.

Establish an advance care directive. These directives for your last days are legal documents. They allow patients to state their treatment wishes and appoint someone to make medical decisions on their behalf.

They should spell out what you want to have happen and what you don’t. They must be signed by two witnesses — not your doctor or the person you name as your healthcare agent. Alternatively, you can have the document notarized.

A copy should be given to your healthcare agent, other family members or friends, and to your doctor. Ask that it be included as part of your medical record.

Get your doctor’s orders in writing. A Physician Orders for Life-Sustaining Treatment is a frequently used document to be signed by both the physician and the patient.

It generally is filled out when a person’s anticipated life span is six months or less and is put in a prominent place where caregivers and paramedics can see it. “The document is pink so it stands out, and we tell people to put it on their refrigerator or where they’re sitting downstairs,” Braunstein says.

Goodkin of Cheviot Hills says she learned a lot from her mother’s passing in April, namely about how to die on your own terms.

“Everybody wants to die with dignity, bottom line,” she says. “Whatever that means to somebody, you just have to honor that.”

Complete Article HERE!

Study finds unwanted care near death

West Palm Beach, Fla. — Americans suffer needless discomfort and undergo unwanted and costly care as they die, in part because of a medical system ruled by “perverse incentives” for aggressive care and not enough conversation about what people want, according to a report released Wednesday.

palliativecareAlthough people repeatedly stress a desire to die at home, free from pain, the opposite often happens, the Institute of Medicine found in its “Dying in America” report. Most people do not document their wishes on end-of-life care and even those who do face a medical system poorly suited to give them the death they want, the authors found.

The result is breathing and feeding tubes, powerful drugs and other treatment that often fails to extend life and can make the final days more unpleasant. The report blamed a fee-for-service medical system in which “perverse incentives” exist for doctors and hospitals to choose the most aggressive care, inadequate training for those caring for the dying, and physicians who default to lifesaving treatment because they worry about liability.

Recommendations of the institute, a private nonprofit arm of the National Academy of Sciences, often make their way into U.S. laws and federal agency policies.

“It’s not an intentional thing. It’s a systemic problem,” said David Walker, the former U.S. comptroller general, who co-chaired the committee of 21 experts that issued the 500-page report.Palliative-Care

Advance directives including living wills have been unpopular and ineffective, the report says. It urges repeated conversations about patients’ wishes beginning far earlier than many would think — perhaps as teenagers — and continuing the talks throughout life.

“The fee-for-service model, the lack of coordination between medical and social services, the challenges that individuals face in finding a provider who’s willing and knowledgeable to speak with them about death and dying all conspire against them coming up with the right individual plan,” said Philip Pizzo, a doctor who was co-chair with Walker.

Pizzo wrote: “Even though death is very much part of the cycle of life, thinking and talking about one’s own death usually remains in the background. It is our hope that this report will lead to improvements in end-of-life care and the experience of dying for all.”

Palliative care praised

The report praised programs in palliative care, which focuses on treating pain, minimizing side effects, coordinating care among doctors and ensuring that concerns of patients and their families are addressed. This type of care has expanded rapidly in the past several decades and is now found in a majority of U.S. hospitals, but the report says many physicians have no training in it.

Palliative-Care2“This report is relevant to persons who are seriously ill, their parents, children, extended families which essentially means every American,” said VJ Periyakoil, director of Palliative Care Education and Training at Stanford University’s School of Medicine, who was not involved in the report.

In many ways, the report is a repudiation of the controversy created by the term “death panel” in response to President Barack Obama’s health care law. The claim centered on the government saving money by deciding who would live and who would die. The controversial proposal never found its way into the law, the 2010 Affordable Care Act.

In fact, the report says the very type of end-of-life care Americans say they want would shrink medical bills and reduce the governmental burden.

“They will have a higher quality of life, and it’s very likely to be less expensive,” said Rep. Earl Blumenauer (D-Ore.), a frequent voice on end-of-life issues who reviewed the report. “But the main key here is that we should be giving people what they want.”

Blumenauer has sponsored a bill to allow Medicare to pay doctors for having end-of-life conversations with patients. That is the very idea that set off the “death panel” fury, which generated the most widespread and high-profile conversations on end-of-life care in the United States since the case of Terri Schiavo, a brain-damaged Florida woman who became the center of a protracted court fight over having her feeding tube removed.

Complete Article HERE!

It Never Entered My Mind

“Though we may be sick, even sick to death, we don’t stop being human. And our desire for the intimate connections we have with those we love remain intact until we die.”

 

 

This is how the conversation started. She said, “It’s hard to talk about this, but I need to tell you what happened.” I said, “OK! Yes, talking things through is often helpful.”

Rebecca is 68 years old. Her husband of 46 years, Jim, age 72, is in a Midwest hospice. He will die very soon. Rebecca tells me, that she and her husband were blessed with good health throughout their long lives. In fact, the only time either of them was in a hospital was for the births of there three daughters. However, six months ago Jim began to complain of a persistent stomachache. His interest in food evaporated. He began to lose weight and he felt tired and run down most of the time. At first he chalked it up to stomach flu, but the symptoms just wouldn’t let up.

hospice025Fast forward five months, past the initial visit with his family doctor, and the blizzard of tests, and the arrangement to see out-of-state oncologist, and an avalanche of more tests, to Jim and Rebecca’s day of reckoning. “Jim, I’m afraid your cancer is inoperable.” His oncologist tells them. “We could try an intensive campaign of chemotherapy and radiation to slow the growth of your tumors, but that’s about all that is humanly possible.”

The doctor’s verdict hit them both like a semi. They left for home the next day. They wisely decided to forego the chemo and radiation and opted for as much quality of life that divine providence would afford them, which, by all accounts, would no more than a month or two.

“It all happened so fast. There was precious little time for Jim to even say goodbye to our daughters and their families, all of who live out of state.” Rebecca is recounting Jim ’s last few days at home. “Our house is not set up for the kind of care Jim was going to need, so we looked to hospice.” Tears pool in Rebecca’s eyes. “I feel like I’m on a run-away train heading, at top speed, for a derailment. I’m terrified and helpless.”

“Jim and I have always been close. I don’t think we spent more than a few nights apart in 46 years of marriage. And we’ve always been very affectionate with one another, even in public. Our friends used to kid us about behaving like newlyweds. They would joke and say, “Hey, get a room!” I think they were all secretly jealous.”

Rebecca is now spending all her waking hours with Jim at the local hospice, which is basically nothing more than a glorified hospital ward. But she tries to make the best of it. She brings linens and towels from home and family pictures and fresh-cut flowers fill Jim’s room. They hold hands and reminisce when Jim isn’t zonked out on morphine. And when he is out of it, Rebecca still holds his hand while she prays.

“Last week Jim had a real bad spell.” Rebecca continues. “He was uncomfortable and agitated. I didn’t know what to do, so I did the only thing I could think of. It’s exactly what I would have done if we were home. I kicked off my shoes, took off my sweater, and climbed into bed with Jim. He was lying on his side, so I slid one of my arms under his neck and I draped my other arm over his abdomen. I nuzzled his neck. I could actually smell him, like I remember him smelling before the hospital odors dominated. In a matter of minutes my embrace calmed us both. It was such a beautiful moment, I’ll never forget it.”

Unfortunately, the reason Rebecca won’t forget that final embrace is not because of the tenderness and intimacy she was sharing with her dying husband, but because shortly after she lay down with Jim in his bed, one of the hospice nurses barged into the room.hospitalbed

“The nurse, hands on her hips like some schoolmarm, face aglow with disapproval, glared at me.” “What do you think you are doing? We can’t have this sort of thing in here. I’ll have to ask you to leave that bed immediately.”

“Well you would have thought we were caught in an indecency. I stammered for words to explain, but no words came out only a groan. I was so ashamed. I must have been beet-red with embarrassment. It took me a few moments to untangle myself from Jim and find my footing on the floor. Luckily Jim slept through the whole thing. Bless him.”

Tears are now streaming down Rebecca’s face. “It never entered my mind that cuddling with my dying husband, soothing and comforting him, might be interpreted as something inappropriate. When the nurse finally left the room, I hung my head and wept.”

This is a cautionary tale; though we may be sick, even sick to death, we don’t stop being human. And our desire for the intimate connections we have with those we love remain intact until we die.

So many of us are thoughtless about the intimacy needs of those around us. Is this a sign of our culturally induced unease with sex? Probably. But when our thoughtlessness impacts on the lives of those who, for whatever reason, are incapacitated, that disregard can be devastating. Regardless if our neglect is careless or intentional the injury is the same.

Those of us who care for and attend sick, elder and dying people need to be particularly vigilant to our prejudices and discomfort around sex, sexuality, and intimacy. Jim’s thoughtless nurse compounded Rebecca’s grief and anguish with guilt and shame. This professional woman should have known better. She violated her patient’s privacy and then shamed her patient’s wife for an innocent act of loving care. And for what?

I believe we ought afford all people, especially those who are incapacitated, a modicum of privacy. I believe that personal privacy should be part of every patient’s bill of rights. Curiously enough, the privacy of our medical records takes precedence over our own personal privacy. What a strange world we live in. And I also believe that when we violate the privacy rights of another it’s a form of abuse and harassment.

Acupressure for animals with cancer – healing touch

I love using acupuncture to treat animals with cancer but it involves finding an acupuncturist in your area and some areas simply do not have acupuncturists for animals. It can also be expensive and while most of my clients believe it is worth every penny, it is not always an option for people on a fixed income.

So a great option if you can’t find an acupuncturist is to find an acupressure practitioner or to do some acupressure on your own animal.

th-1Here is a good guild to finding an acupressure practitioner Tallgrass acupressure practitioner search.

There are many, many ways to work with cancer through acupuncture/acupressure points. There is no one right way. Below is how I normally work with cancer. You may have found another way in another book. Do what feels right to you or use a combination of different styles.

Points can be massaged in small circles or sometimes holding light pressure on a point will work better in some animals. If you massage use clockwise circles.

I was taught visualizations to go along with the points. I find that they can help but if they don’t feel right to you just use the pressure or massage.

The system of acupuncture I use is based on traditional Chinese veterinary acupuncture and uses mostly shu or association points that run in the bladder meridians along the spine. There are two bladder meridians, in the dips just lateral to the spinal column that run along side it.

The following points lie just to the side of the spine in the bladder meridian. I have included meridian point names where there is crossover. I always start my treatments with Tian Men.

  • Fei Shu or Lung Association Points (BL13) – find the scapulas on your dog or cat. Between the scapula and the spine is a little depression on both the right and the left side. Fei shu lies in this depression towards the cranial (closer to the head) part of the scapula. Massage both fei shu points as you think about a soft white mist – like a slightly foggy day in the forest, slightly cool. Think of healthy lungs, moving air in and out with nice deep breaths.
  • Gan Shu or Liver Association points – If you go to the last rib and count four ribs towards the head and then trace that forth rib up to the bladder meridian you will find these points. Often there is a slight change in hair color at this point along the spine. Massage these points as you think of a cool mountain stream that is brilliant green in color. There are no obstructions in this stream. Think of your animal moving and stretching and there blood flowing through the body smoothly.
  • Pi Shu or Spleen Association Points (BL20) Count in to the second rib from last rib and trace that rib up to the bladder meridian. As you massage these points think of a hot, dry yellow clay desert with the sun shining down from above. Think of your animal eating well and there digestion moving in the body.
  • Shen Shu or kidney association points (BL23) Go to the most caudal (closest to the tail) aspect of the last rib. From there make a line perpendicular to the spine and follow that up to the bladder meridian. Kidneys in Chinese medicine have no parts, a yin and a yang component. We will focus more on the yin component with these points but visualize both. Massage these points and picture a deep black sea, out of the seas raises a bright blue fire serpent, shining against the black water. Picture you animal lying happily, content after a long day. They are strong and healthy.

The following points are not on the bladder meridian

  • Tian Men is on the midline of the body right behind the boney bump on top of the head, level with the back of the ears in most dogs. Tian Men helps to open up the channels down the spine and open up obstructions in the body, it also helps to calm and relax most animals. I always start with this point as I feel like it helps the other points to work better and relaxes the cat or dog I am working with. As you massage this point think of the love you want to share with your animal.
  • Bai Hui is along the spine at the junction between the lumbar spine and the sacrum. When your animal is standing find the front of the hips and follow them straight up to the spine. There is a small depression where bai hui is. Bai hui works with Tian Men to complete the opening down the spine and to remove obstructions. Massage this point and think of the sun shining down on this point and energy following into your animal and helping to make them healthy. Note: Human acupuncture practitioners – bai hui is in a very different spot in animals than in humans where it is located on top of the head)
  • Hou San Li (ST36)
  • This point is in the fleshy area to the side of the leg bone about a 1/3 of the way between the knee and the hock, closer to the knee. It can be massaged on either side or on both sides. I recommend doing just one side at a time. As you massage this point think of your animal eating well, picture their immune system, little white blood cells fighting the cancer cells.

Why these points? My main goals in animals with cancer is to stimulate qi to increase the immune response in the body against cancer and to move stagnation which is often the cause of cancer. Secondary goals are to alleviate pain, promote digestion, help with detoxification in the body and stimulate appetite.th

The three organs that stimulate qi production are lung, spleen and kidney. I work with the association points for these organs along the bladder meridians through the points fei shu, pi shu and shen shu.

In addition I always work with liver because it helps to move stagnation in the blood and body and helps with pain. I use the association points gan shu for this.

I often use a point called hou san li or ST36. This point helps to stimulate the immune system, promotes digestion and appetite and is a longevity point.

Bai hui and Tian Men helps to open up the meridian system and remove obstructions. Bai Hui stimulates the yang vitual energy of the body. It is also a very strong intension point. My acupuncture teacher always said that if you could just use one point you could use bai hui and send you healing intension anywhere in the body.

In addition to these points I will sometimes use other points but these are the core points that I feel like really help animals to fight off cancer and have better quality of life. If you are working with an acupuncture or acupressure practitioner ask them to show you the points they use on your animal.

There are many very good books on acupressure for cats and dogs. Here are a few of my favorites.

Acu-Dog a Guide to Canine Acupressure

Acu-Cat: A Guide to Feline Acupressure

Four Paws, Five Directions: A Guide to Chinese Medicine for Cats and Dogs

In addition there are acupressure programs. Tallgrass Animal Acupressure Institute offers classes that can be taken online and DVDs and books.

Complete Article HERE!

The Life Matters Media Connection — Managing Our Mortality

A new posting for my Managing Our Mortality column on the

Life Matters Media website is now available.

 

Life Matters

 

To find my latest column titled — Is Death The Enemy? look HERE!

Here’s what The Managing Our Mortality column is all about:

We are notorious for ignoring and denying death; we keep death out of sight and out of mind, postponing any serious considerations until death comes knocking at our door. This inevitably leaves us unprepared and frightened as we face our own mortality. We seldom get around to asking ourselves; “Will my death be good? Will it be wise? Will it matter?”

Death is not only a universal fact of life, part of the round of nature; but it’s also a necessary part of what it means to be human. Everything that we value about life and living—its novelties, challenges, opportunities for development—would be impossible without death as the defining boundary of our lives. So planning for the inevitable, especially when death is not imminent, is important work for us all.