04/12/18

A Harder Death for People With Intellectual Disabilities

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Several weeks after my patient was admitted to the intensive care unit for pneumonia and other problems, a clear plastic tube sprouted up from the mechanical ventilator, onto his pillow and down into his trachea. He showed few signs of improvement. In fact, the weeks on his back in an I.C.U. bed were making my 59-year-old patient more and more debilitated.

Still worse, a law meant to protect him was probably making him suffer more.

When the prognosis looks this bad, clinicians typically ask the patient what kind of care they want. Should we push for a miracle or focus on comfort? When patients cannot speak for themselves, we ask the same questions of a loved one or a legal guardian. This helps us avoid giving unwanted care that isn’t likely to heal the patient.

This patient was different. Because he was born with a severe intellectual disability, the law made it much harder for him to avoid unwanted care.

In New Hampshire, where I practice, and in many other states, legal guardians of people with intellectual disabilities can make most medical decisions but, by law, they cannot decline life-sustaining therapies like mechanical ventilation. These laws are meant to protect patients with disabilities from premature discontinuation of lifesaving care. Yet, my patient was experiencing the unintended downside of these laws: the selective prolonging of unpleasant and questionably helpful end-of-life care in people with disabilities.

For my patient’s guardian to discontinue unwanted life-sustaining therapies, she had to petition a probate court judge. Busy court dockets being what they are, this can take weeks. Once in court, the judge asks questions aimed at making the right legal decision. How sure is the guardian or family member of the patient’s wishes? What’s the doctor’s best estimate at a prognosis? Often the judge will ask an ethicist like me to weigh in on whether withdrawal is an ethically permissible option. Then the judge makes a decision.

This slow, impersonal, courtroom-based approach to end-of-life decision-making is a far cry from the prompt, patient-centered, bedside care that all of us deserve.

This legalistic approach to end-of-life decision-making also creates unreasonable expectations of legal guardians. Most loved ones have a sense of what the patient they represent would want at the end of life, but they would probably squirm to justify that intuition in a court of law. Yet this is routine for legal guardians of people with intellectual disabilities in my state and others with similar laws. This biases our care toward continuation of what are often uncomfortable, aggressive and potentially unwanted end-of-life treatments.

My patient’s legal guardian was not a family member, but she had known him for years before this hospitalization. She said my patient’s quality of life came from interacting non-verbally with caregivers, listening to music, and eating favorite foods like applesauce. She described the excited hoots he would make when interacting with a favorite nurse.

The contrast to what my patient was experiencing in the I.C.U. was stark. He was sedated. His unsmiling mouth drooped open, a breathing tube between his lips. In place of music, there were the beeps and whirs of the machines that kept him alive. He could not eat. Plastic tubes penetrated every orifice.

Still further, my patient endured the discomforts and indignities that accumulate even in the best I.C.U.s. His muscles grew weaker and stiffer. He developed skin sores and infections. He needed minor surgeries to place the tubes that delivered artificial nutrition and artificial breaths every hour of the day.

Seeing all of this, my patient’s guardian did not think my patient would want to live this way. The I.C.U. can save your life, but it is not where most of us want to die.

In other states, patients with intellectual disabilities have an equal right, via the advocacy of their legal guardians, to avoid unwanted care. A 2010 New York State law, for instance, lets the legal guardians of people with intellectual disabilities withdraw life-sustaining therapies as long as doing so fits the guardian’s sense of the patient’s wishes.

In accord, a policy statement from the American Association on Intellectual and Developmental Disabilities states, “Withdrawing or withholding care may be appropriate in some situations …. Treatment should not be withdrawn or withheld only because a person has a disability.”

This reference to substandard medical treatment of people with disabilities is important. In hospitals across the country, people with disabilities have been subject to all manner of substandard care, including inappropriately premature discontinuation of end-of-life care. This has improved over the past few decades, but a new systematic review shows people with intellectual disabilities still have difficulty accessing high quality end-of-life care, including palliative care specialists. That means the medical system routinely shortchanges people with intellectual disabilities at the end of life, and states like mine add legal insult to that medical injury.

My patient’s caregivers held several multidisciplinary meetings to choose the right way forward. There was consensus that the medical prognosis was dim, and the legal guardian said the patient did not have adequate quality of life. Multiple physicians wrote letters to support a petition to the court to refocus care around comfort and dignity. Ultimately, the legal guardian and the Office of Public Guardian felt they could decline continued intensive care only if it was completely futile, and decided not to submit the petition to the court.

To date, my patient has spent over 140 days in the hospital with little overall improvement. He has endured multiple medical interventions, and unavoidable complications are mounting. Unless the laws change, I.C.U.s across the nation will continue to do the same thing to other patients just like him.

Complete Article HERE!

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03/4/18

10 Signs Death Is Near

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What to expect and how to respond to the natural dying process

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No one can predict the moment of death. But physicians and nurses involved in end-of-life care know that certain symptoms are usually associated with the body’s shutting down. These signs of approaching death are specific to the natural dying process (apart from the effects of particular illnesses the person may have).

Not all dying symptoms show up in every person, but most people experience some combination of the following in the final days or hours:

1. Loss of appetite

Energy needs decline. The person may begin to resist or refuse meals and liquids, or accept only small amounts of bland foods (such as hot cereals). Meat, which is hard to digest, may be refused first. Even favorite foods hold little appeal.

Near the very end of life, the dying person may be physically unable to swallow.

How to respond: Don’t force-feed; follow the person’s cues even though you may be distressed by a loss of interest in eating. Periodically offer ice chips, a popsicle, or sips of water. Use a moistened warm cloth around the mouth and apply balm to the lips to keep them moist and comfortable.

2. Excessive fatigue and sleep

The person may begin to sleep the majority of the day and night as metabolism slows and the decline in food and water intake contribute to dehydration. He or she becomes difficult to rouse from sleep. The fatigue is so pronounced that awareness of immediate surroundings begins to drift.

How to respond: Permit sleep. Avoid jostling the person awake. Assume that everything you say can be heard, as the sense of hearing is thought to persist, even when the person is unconscious, in a coma, or otherwise not responsive.

3. Increased physical weakness

A decline in food intake and lack of energy leads to less energy, even for activities like lifting one’s head or shifting in bed. The person may even have difficulty sipping from a straw.

How to respond: Focus on keeping the person comfortable.

4. Mental confusion or disorientation

Organs begin to fail, including the brain. Higher-order consciousness tends to change. “Few conditions leave people hyperaware when they’re dying,” says palliative-care physician Ira Byock, author of Dying Well.

The person may not be aware of where he or she is or who else is in the room, may speak or reply less often, may respond to people who can’t be seen in the room by others (see Passing Away: What to Expect When Witnessing a Loved One’s Death), may seem to say nonsensical things, may be confused about time, or may act restless and pick at bed linens.

How to respond: Remain calm and reassuring. Speak to the person softly, and identify yourself when you approach.

5. Labored breathing

Breath intakes and exhales become raggedy, irregular, and labored. A distinctive pattern called Cheyne-Stokes respiration might be heard: a loud, deep inhalation is followed by a pause of not breathing (apnea) for between five seconds to as long as a full minute, before a loud, deep breath resumes and again slowly peters out.

Sometimes excessive secretions create loud, gurling inhalations and exhalations that some people call a “death rattle.”

How to respond: The stopped breathing or loud rattle can be alarming to listeners, but the dying person is unaware of this changed breathing; focus on overall comfort. Positions that may help: the head slightly elevated with a pillow, sitting up well-supported, or the head or lying body tilted to the side slightly. Moisten the mouth with a wet cloth and moisturize with lip balm or petroleum jelly.

If there’s a lot of phlegm, allow it to drain naturally from the mouth, since suctioning it out can increase its quantity. A vaporizer in the room might help. Some people are given oxygen for comfort. Be a calm, physical presence, stroking the arm or speaking softly.

Complete Article HERE!

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03/2/18

Stages of Death

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Death is an ultimate cosmic constant. The stages of death herald the conclusion of all vitality in all mortals. Let us delve deeper into understanding the dying process.

 

by Ishani Chatterjee Shukla

“The pale, the cold, and the moony smile
Which the meteor beam of a starless night
Sheds on a lonely and sea-girt isle,
Ere the dawning of morn’s undoubted light,
Is the flame of life so fickle and wan
That flits round our steps till their strength is gone.”

That was Percy Bysshe Shelley on the approach of death. Death has been an object of fantasy and obsession for many a poet and philosopher, whether classic or contemporary. However, the physiological stages that precede and succeed this dire reality are far from the musings of the poetically inclined. The final phases leading up to death can be categorized as emotional and physical. 

Emotional Stages During the Time Leading Up to Death

The emotional stages of dying are experienced by a person when he knows he is dying and is also shared by the people who are very close to the dying person. These emotional stages are also known as stages of grief and include:-

Denial: The dying individual has difficulty in believing that he is so close to death; he refuses to accept that anything could be wrong with him.

Resentment: Once he is convinced of his fate, he feels it is unfair and his frustration finds vent in anger and resentment.

Negotiation: The third stage is where desperation sets in. He tries to bargain with fate, people close to him, his physician, family, friends, etc. to find a cure, whether medical or spiritual, to prolong his life.

Depression: When he realizes that he cannot cheat death, despondency sets in and he begins feeling hopeless. The person suffers from loss of appetite and insomnia.

Resignation or Acceptance: This is the final stage. The person in question gives up all his struggle and accepts his fate and the finality of death.

The signs of approaching death set in about two to four months before death. The person becomes withdrawn and may feel detached from their surroundings. This is a time for introspection for most people and they recall their past to re-evaluate their lives. However, sometimes people suffering terminal illnesses tend to become hyperactive and indulge in their passions and desires. They put the remaining days of their lives in a fast forward mode so as to partake in those activities which they have always wanted to pursue in their lives but never got an opportunity, just like Jack Nicholson and Morgan Freeman did in The Bucket List. 

Signs of death can be classified as close and distant. Close signs are the physical stages that start setting in from a couple of weeks prior to the exact time of death.

Physical Stages of Death

The physical stages are experienced solely by the person who is dying. These can be categorized into the stages at the exact moment of death and the stages that occur some moments after death.

Stages at the Exact Moment:-

  • The heart stops beating
  • The muscles loosen
  • The skin tightens and a grayish pallor sets in
  • The body loses heat and its temperature lowers to about 1.5°F (every hour; the liver retains heat for the longest time after death, based on which the time of death may be established (provided the body is found during that period)
  • The bowels and bladder become devoid of all contents

Stages After About Half-an-Hour:-

  • Terminal appendages such as finger and toe nails, lips, etc., become pale as blood circulation stops
  • The skin, hands and feet turn bluish due to lack of oxygen and blood circulation
  • All the blood of the body gathers at the lowest parts, making them appear darkish purple
  • The eyes begin sinking into the skull
  • The body starts stiffening, due to a phenomenon known as rigor mortis, after around 3-5 hours of death
  • Other than deaths by accident, most of the time, the stages start well in advance for people who are about to die, be it from illness or old age. 

Distant Signs of Death

Distant signs start occurring between three to six months prior to death. These signs may be experienced even when the subject is not suffering any health issues. These signs may include:-

  • Having hiccups while urinating or excreting;
  • Inability to hear the buzzing sound of inner ears when ears are blocked;
  • Drop in normal body temperature;
  • Inability to taste or smell for no apparent reason;
  • Changed likes and dislikes;
  • Repeated dreams symbolizing increasing distance and misdirection.

About a six to eight weeks before death, the person may spend more time sleeping and lazing around. Diminished movement is witnessed, along with signs of disorientation. The person may either have hallucinations, feel paranoid, or he may be washed with a sense of peace and security. As the final stages close in, the person may feel a sudden, short-lived wave of euphoria and energy, the same way as a lamp flickers the brightest before going out. Breathing becomes irregular and then stops altogether.

The family and friends of the deceased person suffer a trauma of loss for a long time, sometimes for throughout their entire lives. Dealing with the death of a loved one, especially, coping with the death of a parent, spouse or sibling can be emotionally taxing and should be dealt with patience and sensitivity. In severe cases, grief counseling and sessions on death management can help ease the pain of dealing with the loss of a dear one.

Death is the greatest truth, even greater than life itself! There is no assurance of the fetus getting born even after being conceived in the womb, but there is the stoic assurance of encountering death even as the faintest pulse of life starts throbbing. It is not the end but a transition to the afterlife, the beginning of a new journey towards further education and enlightenment of the soul; and we all know that the soul is immortal. Death only marks the end of one aspect of our journey as the soul transcends to a higher realm of consciousness.

Complete Article HERE!

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01/12/18

Signs of the Journey Towards Death

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Recognizing the dying process

The dying process usually begins well before death actually occurs. Death is a personal journey that each individual approaches in their own unique way. Nothing is concrete, and nothing is set in stone. There are many paths one can take on this journey but all lead to the same destination.

As a person comes close to death, a process begins; a journey from the known life of this world to the unknown of what lies ahead.

As that process begins, a person starts on a mental path of discovery, comprehending that death will indeed occur and believing in their own mortality. The journey ultimately leads to the physical departure from the body.

There are milestones along this journey. Because everyone experiences death in their own unique way, not everyone will stop at each milestone. Some may hit only a few while another may stop at each one, taking their time along the way. Some may take months to reach their destination, others will take only days. We will discuss what has been found through research to be the journey most take, always keeping in mind that the journey is subject to the individual traveler.

The Journey Begins: One to Three Months Prior to Death

Behavioral and Psychological Changes: As a person begins to accept their mortality and realizes that death is approaching, they may begin to withdraw from their surroundings.

They are beginning the process of separating from the world and those in it. They may decline visits from friends, neighbors, and even family members. When they do accept visitors, they may be difficult to interact with and care for. They are beginning to contemplate their life and revisit old memories.

They may be evaluating how they lived their life and sorting through any regrets. They may also undertake the five tasks of dying.

Physical Changes: The dying person may experience reduced appetite and weight loss as the body begins to slow down. The body doesn’t need the energy from food that it once did. The dying person may be sleeping more now and not engage in activities they once enjoyed. They no longer need food nourishment. The body does a wonderful thing during this time as altered body chemistry produces a mild sense of euphoria. They are neither hungry nor thirsty and are not suffering in any way by not eating. It is an expected part of the journey they have begun.

One to Two Weeks Prior to Death

Mental Changes: This is the time during the journey that one begins to sleep most of the time. Disorientation is common and altered senses of perception can be expected. One may experience delusions, such as fearing hidden enemies or feeling invincible.

The dying person may also experience hallucinations, sometimes seeing or speaking to people who aren’t there. Often times these are people who have already died. Some may see this as the veil being lifted between this life and the next.

The person may pick at their sheets and clothing in a state of agitation. Movements and actions may seem aimless and make no sense to others. They are moving further away from life on this earth.

Physical Changes: The body is having a more difficult time maintaining itself. There are signs that the body may show during this time:

  • The body temperature lowers by a degree or more.
  • The blood pressure lowers.
  • The pulse becomes irregular and may slow down or speed up.
  • There is increased perspiration.
  • Skin color changes as circulation is diminished. This is often more noticeable on the lips and nail beds as they become pale and bluish.
  • Breathing changes occur, often becoming more rapid and labored. Congestion may also occur causing a rattling sound and cough.
  • Speaking decreases and eventually stops altogether.

Journey’s End: A Couple of Days to Hours Prior to Death

The person is moving closer towards death. There may be a surge of energy as they get nearer. They may want to get out of bed, talk to loved ones, or ask for food after days of no appetite. This surge of energy may be quite a bit less noticeable but is usually used as a dying person’s final physical expression before moving on.

The surge of energy is usually short, and the previous signs become more pronounced as death approaches. Breathing becomes more irregular and often slower. “Cheyne-Stokes” breathing, rapid breaths followed by periods of no breathing at all, may occur. Congestion in the airway can increase causing loud, rattled breathing.

Hands and feet may become blotchy and purplish (mottled). This mottling may slowly work its way up the arms and legs. Lips and nail beds are bluish or purple. The person usually becomes unresponsive and may have their eyes open or semi-open but not seeing their surroundings. It is widely believed that hearing is the last sense to go so it is recommended that loved ones sit with and talk to the dyingduring this time.

Eventually, breathing will cease altogether and the heart stops. Death has occurred.

Complete Article HERE!

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01/9/18

This Was Not the Good Death We Were Promised

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When my father was dying of pancreatic cancer last summer, I often curled up with him in the adjustable hospital bed set up in his bedroom. As we watched episodes of “The Great British Baking Show,” I’d think about all the things I couldn’t promise him.

I couldn’t promise that the book he’d been working on would ever be published. I couldn’t promise he would get to see his childhood friends from England one more time. I couldn’t even promise he’d find out who won the baking show that season.

But what I could promise — or I thought I could — was that he would not be in pain at the end of his life.

That’s because after hearing for years about the unnecessary medicalization of most hospital deaths, I had called an in-home hospice agency to usher him “off this mortal coil,” as my literary father still liked to say at 83.

When a doctor said my father had about six months to live, I invited a hospice representative to my parents’ kitchen table. She went over their Medicare-funded services, including weekly check-ins from a nurse and 24/7 emergency oversight by a doctor. Most comfortingly, she told us if a final “crisis” came, such as severe pain or agitation, a registered nurse would stay in his room around the clock to treat him.

For several months, things went well. His primary nurse, who doubled as case worker, was kind and empathetic. A caretaker came three mornings a week to wash him and make breakfast. A physician assistant prescribed drugs for pain and constipation. His pain was not terrible, so a low dose of oxycodone — the only painkiller they gave us — seemed to suffice.

In those last precious weeks at home, we had tender conversations, looked over photographs from his childhood, talked about his grandchildren’s future.

But at the very end, confronted by a sudden deterioration in my father’s condition, hospice did not fulfill its promise to my family — not for lack of good intentions but for lack of staff and foresight.

At 7 p.m. on the night before my father’s last day of life, his abdominal pain spiked. Since his nurse turned off her phone at 5, I called the hospice switchboard. To my surprise, no doctor was available, and it took the receptionist an hour to reach a nurse by phone. She told us we should double his dose of oxycodone, but that made no difference. We needed a house call.

The only on-call nurse was helping another family two hours away. So my sister and I experimented with Ativan and more oxycodone, then fumbled through administering a dose of morphine that my mother found in a cabinet, left over from a past hospital visit. That was lucky, because when the nurse arrived at midnight, she brought no painkillers.

After the nurse left, my father’s pain broke through the morphine. I called the switchboard again, and it took three hours for a new nurse to come. She was surprised he hadn’t been set up with a pump for a more effective painkiller. She agreed that this constituted a crisis and should trigger the promised round-the-clock care. She made a phone call and told us the crisis nurse would arrive by 8 a.m.

The nurse did not come at 8 a.m. Or 9 a.m. When his case worker was back on duty, she told us — apologetically — that the nurse on that shift had come down with strep throat. Her supervisor stopped by, showed us the proper way to deliver morphine (we’d been doing it wrong) and told us a pain pump and a crisis nurse should arrive by noon.

Noon passed, then 1 p.m., 2 p.m. No nurse, no pump.

By this time, my father had slipped into a coma without our noticing; we were thankful his pain was over but heartbroken he wouldn’t hear our goodbyes. Finally, at 4 p.m., the nurse arrived — a kind, energetic woman from Poland. But there was little left to do. My father died an hour later.

At the end of life, things can fall apart quickly, and neither medical specialist nor hospice worker can guarantee a painless exit. But we were told a palliative expert would be at my father’s bedside if he needed it. We were not told this was conditional on staffing levels.

I didn’t realize how common our experience was until a few months after his death, when two reports on home hospice came out — one from Politico and one from Kaiser Health News. According to their investigations, the hospice system, which began idealistically in the 1970s, is stretched thin and falling short of its original mission.

Many of the more than 4,000 Medicare-certified hospice agencies in the United States exist within larger health care or corporate systems, which are often under pressure to keep profit margins up.

Kaiser Health News discovered there had been 3,200 complaints against hospice agencies across the country in the past five years. Few led to any recourse. In a Medicare-sponsored survey, fewer than 80 percent of people reported “getting timely care” from hospice providers, and only 75 percent reported “getting help for symptoms.”

I called Edo Banach, the president of the National Hospice and Palliative Care Organization, to get the trade group’s response. He expressed sympathy for my father’s suffering but was adamant that good hospice experiences “far outweigh” the negative ones.

Granted, more than a million Medicare patients go into hospice care every year, so the complaints are in the minority. Mr. Banach told me he’s worried that drawing attention to what he called the “salacious” stories of failed hospice care means more families will turn to less holistic, less humane end-of-life care. That could be true. But then, should there be more transparency early on? Should the hospice reps explain that in most cases, someone will rush to your loved one’s side in a crisis, but sometimes the agency just doesn’t get the timing and the logistics right?

As the number of for-profit hospice providers grows, does that model provide too great an incentive to understaff nighttime and weekend shifts? The solution may have to come from consumer advocacy and better regulation from Medicare itself.

A new government-sponsored website called Hospice Compare will soon include ratings of different agencies, which will ideally inspire some to raise their game. When I looked up the agency we had used, its customer satisfaction rate for handling pain — based on the company’s self-assessment — was 56 percent.

I considered making a complaint in the days after my dad’s death, but frankly we were just too sad. Even now, I believe hospice is a better option than a sterile hospital death under the impersonal watch of shift nurses we’d only just met. But I wonder whether that hospital oversight might have eased my father’s pain earlier on that last day.

Ultimately, even without pain relief, he was probably more comfortable in his own home, tended by his children, doing our best.

But then I think: He deserved to have both.

Complete Article HERE!

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12/14/17

People are hiring doulas to help them die

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By Molly Shea

Chad Lewis charges $20 to $25 an hour to assist the gravely ill and their families.

When Chad Lewis’ mother passed away seven years ago from complications from diabetes, he couldn’t stop thinking about her death. “It wasn’t loving and sweet,” he says. “It was chaotic and angry and scary.”

So Lewis, a 39-year-old who lives in Astoria, set out to find a better way to process the end of life, ultimately making a career shift from Broadway stage manager to death doula.

Doulas who aid women in giving birth have been trendy for years, but now a different type of support person is helping people navigate life’s other major passage. Dying people and their loved ones are hiring death doulas to help them coordinate end-of-life care and vigils, plan funerals and provide a sympathetic but unattached ear.

The profession first came into being in the early aughts and is growing increasingly popular. In 2014, Suzanne O’Brien launched the New York City-based Doulagivers, an online training program for death doulas.

“I can hardly keep up with demand,” says O’Brien, who also holds monthly seminars at an Upper West Side branch of the New York Public Library.

The process usually starts with a patient deciding how they want to die and outlining that with the doulas.

“It’s similar to a birthing plan … Where [do] you want to die? What kind of room you want to die in? What [do] you want to be looking at? What [do] you want it to smell like?” says Shelby Kirillin, 41, a Richmond, Va.-based death doula. She charges between $1,000 and $3,000 as a retainer fee, and asks for payment upfront to avoid chasing down money posthumously. She’ll also work pro bono if a situation merits it.

The “scary” death of Chad Lewis’ mother led him to become a doula.

“I had one young girl say she wanted to die in a yurt,” says Kirillin of a client who’s currently planning her own death. The girl’s cancer condition makes a yurt too impractical, so Kirillin is getting creative. “We decided on mosquito netting over her bed, and twinkle lights to look like stars.” After she takes her last breath, her loved ones will put wildflowers in her hair.

Death doulas also help out after someone passes. Lewis, who charges $20 to $25 per hour, likes to create a basic plan to take care of issues such as child care, grocery shopping and bill payment, to clear up mental space for grieving families.

And more than anything, the professionals help patients process what they’re going through.

“Families buffer pain — you hate to see people you love in pain. And doulas aren’t buffers,” says Kirillin. “Instead of saying, ‘OK, let’s see if we can give you meds,’ I’ll say, yeah, ‘I bet you are in pain. Tell me about it — what does it feel like?’”

When Richmond resident Mel Titus’ best friend of 31 years, Kim, was entering the final stages of her battle with cervical and breast cancers last year, they were introduced to Kirillin.

They were skeptical at first, but Kim (whose last name is being withheld for personal reasons) decided on a death doula so she could manage her death the way she did her life. “She was a processor,” says Titus. “She really liked that she could come up with a plan and do things a certain way.”

And for Titus, Kirillin provided emotional support during an impossible time. “I would have tough days, and I’d call Shelby, and she’d walk me through it,” she says.

Kirillin helped the duo plan Kim’s visitor schedule, and what music they’d play and books they’d read in the final days. Taking care of logistics freed them up to reminisce about Kim’s life, and even laugh about how things were going. “We actually had some funny moments, believe it or not,” says Titus. “It’s sad, but it can be a happy thing, too.”

Complete Article HERE!

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