Brain Disease Swallowing Problems

 

Brain Disease Swallowing Problems

 

 

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Swallowing problems in degenerative brain diseases

People who have degenerative brain diseases, such as Alzheimer’s, other dementias, Parkinson’s disease and Amyotrophic Lateral Sclerosis (ALS or Lou Gehrig’s disease), often develop swallowing problems (dysphagia) as their disease progresses. This is because the degeneration of the nerves and their complex connections often spreads throughout a person’s nervous system.

 

Why does swallowing become a problem?

We take swallowing for granted until we have trouble doing it. Most of us have experienced an episode of choking when food or fluids enter the trachea (windpipe). This is called aspiration, and our lungs respond with a fit of coughing to clear our airway.

Swallowing is a complex action that requires the sensory and motor parts of our brain to work together. When we eat and drink, the brain senses food and fluids in our mouth, moves them safely into the esophagus, and protects the trachea at the same time. Food or fluid then moves down the esophagus into the stomach. Swallowing requires 40 muscles working together with both the sensory and motor parts of the brain. A degenerative brain disease can affect a person’s ability to swallow in different ways, depending on which parts of the brain are affected and how quickly the disease progresses.

 

Swallowing problems are serious

When swallowing begins to fail, it signals that a person’s degenerative brain disease is at an advanced or life-threatening stage. Serious infections (pneumonia and lung abscess) develop in the lungs when food and fluids are aspirated into the airways. Almost half of patients with dementia who develop “aspiration pneumonia” will die within the next six months. 

Oral or intravenous antibiotics may cure pneumonia, but the more frequently infections occur, the more likely antibiotics will be ineffective. This is because the person is repeatedly aspirating either food and fluids or saliva, which is an indication that the disease is progressing. In order to clear pneumonia, antibiotics need the help of an effective cough and a strong immune system, both of which are lacking in this phase of illness. Also, with each infection, the person becomes weaker and can harbor more resistant organisms. Complications such as a C. difficile infection in the bowel can arise from repeated courses of antibiotics.

 

How can the risk of infection be reduced?

To reduce the risk of aspiration, a speech language pathologist (speech therapist) or occupational therapist with training in this area first conducts a swallowing assessment. Once the specific swallowing problem is identified, the pathologist or therapist recommends strategies for preventing aspiration.

 

 

Ensuring that the person is awake, sitting upright and concentrating on eating or drinking is essential for reducing the risk of aspiration regardless of the swallowing problem. Avoiding foods that are particularly difficult to swallow can prevent choking.

Changing the texture of other foods (for example, by mincing or pureeing) and thickening fluids can make them easier to swallow safely.

Try Thick-It Instant Food and Beverage Thickener

 

Thick-It 36 OZ
Feeding a person in this way has been called “feeding at risk” but a better name for it is “careful hand feeding.”

Despite these measures and vigilant feeding by family or staff in a facility, aspiration and infection can still occur. This is because swallowing problems worsen over time and a person’s chest muscles become too weak to cough. As a result, he or she cannot expel fluid or food, and the airway is unprotected. When this occurs, it is called “silent aspiration.” Saliva too can be aspirated, and bacteria in the mouth can cause infections in the lungs.

 

Is a feeding tube helpful?

Recurring infections and more trouble swallowing signal advanced degenerative brain disease. Often by this stage, the person is no longer able to understand his or her medical issues. Family members are often asked to step in to decide whether their loved one would accept a feeding tube.


 

What is a feeding tube?

A temporary feeding tube is passed through the nose and into the stomach. Rarely is a temporary tube used for more than a few days, because it is uncomfortable and easily pulled out. 

 

 

A long-term feeding tube called a PEG tube (percutaneous gastrostomy tube) is surgically inserted. A scope is passed through the mouth and into the stomach. It presses the stomach against the abdominal wall and a tube is passed from outside the patient’s body into the stomach.

With PEG tubes, there is a one-in-ten chance of painful ulcers, infection or tube leakage at the abdominal wall. There is a three-in-a-hundred chance of severe complications, such as serious bleeding, perforation of the bowel, secondary pneumonia, or breakdown of the abdominal wall.

 

How effective are feeding tubes?

Many family members feel a feeding tube may prolong life, improve its quality, and possibly reverse their loved one’s degenerative brain disease. However, multiple studies show that people who have degenerative brain diseases do not live any longer with a feeding tube than a similar group of people who are fed carefully by hand. Studies also show that a feeding tube does not reduce the risk of aspiration. It is still possible to aspirate saliva and develop a serious pneumonia. 

The progressive weakness related to degenerative brain disease isn’t because of lack of intake. It is the outcome of the natural progression of the illness. The tube does not affect the progression of the disease nor does it improve a person’s quality of life. 

Many family members want a feeding tube for their loved one because they do not wish him or her to feel hunger. However, a person’s desire to eat lessens as end of life approaches. As well, many people with advanced degenerative brain diseases are not very active. They do not need as many calories as they did when they were mobile.

See End of Life Nutrition

 

Complications

While the feeding tube can get food safely to a person’s stomach, it cannot prevent aspiration of saliva into the lungs. As well, the feeding tube cannot prevent aspiration of food into the lungs if the person has gastric reflux (food passing from the stomach back into the esophagus because of a leaky stomach valve). 

 

Advantages of careful hand feeding

 

 

 

Careful hand feeding has many advantages over tube feeding. It allows the person to still experience the taste of food and interact with others. Preserving these important parts of eating may result in a higher quality of life for a loved one. Careful hand feeding reduces the use of medications needed to treat the discomfort of the tube.

 

 

Careful hand feeding is the simplest and most satisfying way for a person to continue eating. The recommended approach is small amounts of favorite foods. If the person refuses food, then basic mouth care is offered.

 

 

How do you make the best decisions?

Dealing with complex decisions in advanced disease can be very stressful for the family. So it is important for family members to support each other through these times.

It also is not uncommon for family members to have differing opinions about what is best for their loved one. This is when it is essential for family members to focus on what they believe their loved one would prefer rather than on what they would wish to see happen. The health care team can help support families through these difficult conversations.

Decisions at this time are best made with the health care team and family working together. The health care team can explain the options available for a loved one, given his or her stage of illness. The health care team can also outline what is and isn’t medically possible and appropriate. The family can give insight into what their loved one would prefer if he or she were able to speak for themselves.

Adapted from an article by Romayne Gallagher MD, CCFP

 

Recommended Reading:

The Dying Process – A Hospice Social Worker’s Perspective On End Of Life Care: A helpful guide for coping and closure during end of life care

The Dying Process – A Hospice Social Worker’s Perspective On End Of Life Care provides a detailed exploration of issues pertaining to patient and family grief reactions, the duration and preparation for death, closure support needs, understanding pain, pain management and avenues to create a positive death experience for both the patient and family.

Over a decade of work in the hospice field, author and social worker, Dana Plish offers professional insight regarding his experiences with patients and families who are in the dying process.

 He elaborates on the process of death which impacts family coping, patient and family closure, barriers to acceptance, and examines negative and positive death processes. He concludes with ways in which family can aid the patient during life to death transition and support ongoing bereavement and grief needs. Dana comments on patient grief related to the loss of pets and supporting patient closure with their pets when possible.

Dana has worked in the social services field for 30 years and he presents the subject matter in a simple, easy to read and understand format which serves as a practical guide for anyone who has a loved one in the dying process.

 

 

Thanks for visiting and reading …

I hope this article provided you some helpful ideas.  I welcome your comments below.

-Laurie

 

 

 

You may also be interested in:

End of Life Nutrition

Make a Living Will/Health Care Directive

Dying Process – Dehydration

Planning Ahead for Parkinson’s Needs

Best Exercises for Parkinson’s Disease – A Complete Physical Activity Guide

New Spoon for Hand Tremors Helps at Mealtime

Caregiving for Parkinson’s Disease

Parkinson’s Swallowing and Dental Problems

Parkinson’s Disease and Low Blood Pressure

Parkinson’s Disease Myths – Know the Facts!

About Me

Create Your Own Blog

 

End of Life Nutrition

 

End of Life Nutrition

 

 

 

 

 

Palliative feeding can be challenging.

 

When my mom was very ill from cirrhosis of the liver, she required assistance with eating. 

 

Due to her confusion, sleepiness, lack of coordination and shaky hands, it was important to have someone with her at mealtimes to help out.  At this late stage, mom was too ill to receive nutritional benefit from the food, but eating was still a pleasurable activity, and helped us family members feel that we were doing something to help. 

 

It is a natural instinct to want to feed someone you love, even when you know intellectually that the person’s body is too ill to make use of the nutrients.  The doctor explained that in the presence of serious advanced illness such as hers, the body obtains energy by breaking down its own muscle and fat, rather than by processing the food.

 

Being a liver patient with fluid accumulation who was pre-diabetic, she had been on a low salt, low sugar diet with limited fluids for many months.  Now, in Palliative Care, all of Mom’s previous dietary restrictions were lifted.  The  decision to no longer continue curative or life-prolonging therapies meant here was no further benefit in limiting her food choices or fluid intake, and it had become important to allow her to enjoy eating and drinking again.

 

Fortunately, Mom still had a good appetite, and really enjoyed thinking about, requesting, and eating foods that she had not had in a very long time. And let me tell you, she was not asking for vegetables!  She ate sushi, taco chips, donuts, pizza, fast food hamburgers, candy, butter tarts and drank mango juice.  Providing her with these treats and helping her to enjoy them was a bright spot for all of us.  Although bittersweet, this was an activity which lightened the atmosphere quite a bit.

 

Mealtimes presented some challenges, though.  Mom’s reflexes were poor, and she would often suddenly lose alertness.

 

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We had to make sure she remained fully awake (sometimes she looked like she was, but was “somewhere else”).  It was explained to us that there was a high risk of asphyxiation if she did not swallow properly, and that would be a very serious situation.

 

 

 

These are some things to keep in mind with palliative feeding:

 

 

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  • Ensure the person is sitting comfortably and upright to make swallowing comfortable.

 

  • Provide finger foods when eating with cutlery has become difficult.

 

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  • Use a spoon whenever practical as opposed to a fork.

 

  • Offer small amounts of food, placed at the front of the mouth, allowing the person time to swallow before offering another bite.

 

 

 

If your loved one is experiencing a complete lack of appetite, on the other hand, it is important to remember that people with advanced illnesses can be comfortable with little or no food intake for weeks or months. That is because people who are seriously ill often do not experience hunger or thirst in the way that healthy people do. Forcing someone to eat in these situations can make them feel nauseated and may contribute to feelings of distress.

 

Family and friends often find a person’s complete lack of appetite and weight loss worrisome. It is a natural instinct to encourage the person to eat and drink more, thinking that the person will feel stronger and live longer, but if your doctor has told you that this is not the case, you must come to terms with this.  This is the time to let the patient make the decisions about what to eat, when to eat or whether to eat or drink at all.

 

 

If you are feeding someone who doesn’t have much appetite, here are some tips to consider:

 

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  • Prepare several small meals during the day, as opposed to three larger ones.
  • Avoid spicy foods if the person can no longer tolerate them.
  • Avoid cooking odors if they are troublesome.
  • Do not be surprised if the person craves certain foods some days, and has no interest in them on others.
  • Try not to get frustrated if the person asks for a certain food and then loses interest by the time the food arrives.
  • Let the person decide how much, what, and when they will eat.
  • Recognize that individuals with serious illnesses often become full quickly, sometimes after just a few bites of food.
  • Try not to push the person to eat more, as a feeling of fullness, nausea or vomiting may result.
  • Try not to make mealtimes a time of tension about eating and food. Rather, focus on sharing time together.
  • Remember that a rejection of food is not a rejection of you.
  • Unless a health provider asks for updates on weight, do not routinely keep track of weight.

 

 

 

We often brought meal replacement drinks for my mom in the hospital and hospice for when she wasn’t eating much.  Of course, it did not change the trajectory of her disease, but she enjoyed them (and we felt good about it).

(left) Boost Very High Calorie Nutritional Energy Drink

 

 

 

 

 

Some other items that made things easier for all of us:

 

Maddadapt II Built-Up Cutlery For people with upper extremity weakness or reduced range of motion. These stainless steel utensils feature built-up handles for people with arthritis, weak grasps or other hand limitations. Their contoured shape makes them easier to hold and use.

 

 

Spillproof Kennedy Cup with Lid – lightweight spill-proof drinking cup that is used with a straw. The patented design allows the cup to be easily filled with up to 7 ounces of warm or cold liquid. Once the lid is screwed on the liquid will not spill out even if the cup is turned completely upside down. This means an end to messy spills and new independence to those who have difficulty using conventional cups.

 

 

 

Metal Pill Crusher Easily crush hard-to-swallow pills into powder that can be mixed into food or drinks with this heavy-duty die-cast crusher. The chrome-plated zinc with aluminum and stainless steel fillings is corrosion resistant and built to last.

 

 

 

Terry Crumb Catcher Bib

 

 

 

Pivot Tilt-top Overbed Table (U-Base) – this unique table top tilts with the angle of the mast to provide a flat surface regardless of the angle of the mast. It also closes flat for easy under-bed storage. The U-shape base (sometimes referred to as C-Base) overbed table not only provides a convenient table for bed-bound seniors, but also accommodates most room seating by leaving room for your feet while seated in a chair or wheelchair.

 

 

 

 

 

 

 

In summary, remember that nutrition is almost always compromised in the final phase of progressive terminal illness, and that providing calories cannot change that because the body is not able to use them for energy or to build muscle, fat and so on. 

 

It is a natural instinct to encourage the person to eat and drink more, thinking that the person will feel stronger and live longer, but this is simply not the case.  From personal experience, I can tell you that this can be a very difficult concept for loved ones to internalize.  

 

Even if  high-calorie supplements are provided, they won’t make a difference. As I learned from the hospice care team, the recommended approach to feeding at the end of life is to “feed for comfort.” Simply provide small amounts of favorite foods as requested by the patient.

 

 

 

Recommended Reading:

 
 A surprisingly warm and informative resource on hospice and other end-of-life care options. Individuals approaching the end of life, and their loved ones, face many challenges–but as hospice nurse Karen Whitley Bell reassures us, this difficult time also offers an opportunity to explore and rediscover a richer meaning in life.
Drawing on her years of experience, Bell has created a comprehensive, insightful guide to every aspect of hospice care and the final stages of life.  For people in hospice care, as well as their friends and families, this is an indispensable reference, a trustworthy source of comfort and spiritual healing.

 

 

Do you have any thoughts or experience with end of life or palliative feeding?  Please share them in the comments section below.

 

 

 

 

You may also be interested in:

New Spoon for Hand Tremors Makes Mealtimes Easier

Make a Living Will/Health Care Directive

Dying Process – Dehydration

Introduction to Palliative and Hospice Care

10 Myths About Hospice

Best Nutrition Drinks for Seniors and Diabetics

The Caregiver’s Guide to ALS

About Me

Create Your Own Blog

 

Hospital Bed for Home Use

Hospital Bed for Home Use

 

 

 

 

Should You Consider a Hospital Bed For Home Use?

 

If you or a loved one has difficulty getting in and out of bed, reaching a standing position, or is bed bound and requires treatments in bed, you may want to consider renting or purchasing a hospital bed for use in your home.

 

 

 

 

 

 

The main purposes of hospital beds at home is that they permit body positioning that is not feasible in a regular home bed and that they permit the attachment of other pieces of equipment that cannot be used on a regular home bed. 

 

They also make it easier and safer for the patient to get in and out of bed and stand up, and they make it easier for a caregiver to provide bedside care (such as position changes, bathing and assisting with eating). 

 

In addition, they can be customized with wheels for moving the bed and side rails for patient security. If the patient is at risk of rolling out of bed or has limited mobility, a bed side rail is particularly important.

 

 

Let’s talk about five important reasons you may want to look into bringing one into your home:

 

1. Better positioning for patients

 

When people spend extended periods of time in bed, the pressure that the bed exerts on their bodies causes skin tissues to become trapped between bone and the bed’s surface, causing pressure sores or bedsores.

For such patients, hospital beds provide an effective solution: they enable users to make adjustments to the positioning of the bed, allowing them to shift the pressure that the bed places from one part of their body to another. Also, patients at risk for bedsores should also take care while choosing mattresses, and select one that will reduce friction

 

2. Improved Circulation

 

Hospital beds allow users to alter and adjust the bed to better position their head and feet. These changes allow for movement as well as periodic change to the pressure points on the body, thereby improving the patient’s blood circulation while in bed.

 

3. Safety

 

Hospital beds become a requirement for people who suffer from conditions that require a caregiver’s monitoring or occasional restraint. Especially in the case of people who are at risk of falling out of bed – for instance, people living with dementia or other cognitive impairments – the bed rails on hospital beds assist in reducing the risk of fractures due to falls.

While full-length bed rails are a necessity for some patients, many people use rails as an assist while getting in and out of bed, or to re-position themselves in the bed. These patients do not require the restraint of a full-length rail. Most of our hospital beds are available with both full and half-rail options.

 

4. Transferring

 

Often, patients experience difficulty getting in and out of beds. Hospital beds make this problem easier because they have the ability to raise the patient higher or lower. Due to this feature, patients can sit up and get out of bed in the position with relative ease.

People experiencing hip and knee problems, for instance, typically look to be seated with those joints at an angle greater than 90 degrees; this helps them comfortably get into a standing position. Hospital beds allow users to do so with safety and ease.

 

5.  Caregiver Assistance

 

Caring for a loved one who is bedridden can take a toll on the physical well-being of a caregiver, and a common problem they face is back pain from frequent bending to administer care.


Hospital Beds enable caregivers to elevate their patients to a level at which they can care for them without straining their own bodies in the process.

 

Types of Hospital Beds

 

 

Electric Hospital Bed

The basic modern hospital bed is called an electric bed. They are the beds most often seen in city hospitals or major town hospitals. The options of raising and lowering the bed are chosen through buttons that are set on the side rails.

 

Invacare Homecare Full Electrical Hospital Bed – Best Seller

 

This is the bed you would most likely look into, unless the patient has the specific needs outlined in the bed types below.

Bariatric Bed

A Bariatric bed is the heavy-duty full-electric bed frame you would need for bariatric individuals weighing up to 600 pounds. 

 

Drive Medical Full Electric Bariatric Hospital Bed with Mattress and 1 Set of Rails, Model 1530010BV-PKV
Drive Medical Full Electric Bariatric Hospital Bed with Mattress and 1 Set of T Rails, Model - 15300BV-PKG

 

Gatch Bed 

The gatch bed has long-standing history of use in hospitals. They are most often seen in nursing homes and older and/or remote areas that are economically-challenged that utilize these beds because of their lack of need for electricity. They have three cranks at the foot of the bed below the mattress. One crank raises and lowers the whole bed, one crank raises and lowers the head of the bed and the last crank raises and lowers the foot of the bed.

 

Stretchers

The types of beds you see in a hospital emergency room unit are typically stretchers. These beds are designed for mobility. In the event a person must dial 911 from a separate location, these beds can easily transfer from house to ambulance to the operating room to the ER unit, thanks to special features, such as folding legs.

 

Low Beds

Low beds are specifically designed for those patients who are liable to fall off beds and cause injury, despite the restraint of the side rails. Low beds are set from about 8 inches to less than two feet off the ground at the highest setting. Some designs of the bed have a high/low maneuvering setting, but most beds are just low to the ground with just the option to raise or lower the head and foot of the bed.

 

 

Low Air Loss Beds

A low air loss bed is a type of bed which has special cushions and a system designed to blow air into sacs within the mattress. These beds are designed for burn patients and patients with skin grafts by keeping them cool and dry, for patients prone to bed sores and patients with circulatory and/or skin problems by reducing pressure on the skin.

 

 

Circo-electric Beds 

A circo-electric bed enables the bed to rotate inside circular bars that look like a giant hamster treadmill. These beds used for patients in traction, severe skin conditions, patients who have severe burns or for patients who spinal injuries that cannot be moved but must be turned every two hours according to standard hospital policy.

 

 

Clinitron Beds

A Clinitron bed is similar to both the low air loss bed and the circo-electric bed in that it is .designed for patients with pressure ulcers, flaps, grafts, burns or skin disorders. It reduces pressure on the patient’s skin because it is filled with material that resembles sand. Dry, warm air circulates through the material to maintain a level temperature and to support the body’s weight evenly.

 

 

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No matter which type of bed you choose, it is important to take some simple precautions in order to use the hospital bed safely. 

 

Here are some tips for maintaining the safety of the patient using a hospital bed at home:

 

  • Keep the wheels of the bed locked at all times. Unlock the wheels only if the bed needs to be moved. Once the bed is moved into place, lock the wheels again.

 

  • Put a bell and a telephone within reach of the bed. These should be available so you can call for help when needed.

 

  • Keep the side rails up at all times except when you get in and out of bed. You may need a footstool next to the bed. Use a night light if you need to get out of bed at night.

 

  • Put the hand control pad within easy reach to adjust positions. Learn to use the hand control and practice moving the bed into different positions. Test the bed’s hand and panel controls to be sure the bed is working correctly. You may be able to lock the positions so the bed cannot be adjusted.

 

  • Follow the specific manufacturer’s instructions for using the bed. Check for cracks and damage to the bed controls. Call the bed manufacturer or another professional if you smell burning or hear unusual sounds coming from the bed. Do not use the bed if there is a burning smell coming from it. Call if the bed controls are not working correctly to change positions of the bed.

 

  • When you adjust any part of the bed, it should move freely. The bed should extend to its full length and adjust to any position. Do not place the hand control or power cords through the bed rails.

 

If you think a hospital bed might be helpful in your home, consult with your physician to determine what specific functions you should be looking for. 

 

Please drop me a comment if you have any thoughts on or experience with having a hospital bed in the home.

 

You may also be interested in:

Prevent Bed Sores

Adjustable Beds – Benefits and Reviews

Top Pillows to Relieve Neck Pain

How to Buy Adult Diapers

For Caregivers: Coping With Incontinence

How to Give a Sponge Bath in Bed

How to Choose Adaptive Clothing

Shower Chair and Bath Bench Guide

All About Grab Bars and Hand Rails for Safety

Prevent Bed Sores

Caregivers – How to Reduce the Risks from Heavy Lifting

Choosing the Right Transport Chair

Practical Shoes for the Elderly

Help for Painkiller-Induced Constipation (OIC)

The Most Effective Stop Smoking Aids

Adjustable Beds Guide and Reviews

10 Myths About Hospice

A Hospice Reflection

 

 

 

Do Not Resuscitate

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A “do not resuscitate” (DNR) order indicates that a person — usually with a terminal illness or other serious medical condition — has decided not to have cardiopulmonary resuscitation (CPR) attempted in the event his or her heart or breathing stops. In most situations, a DNR order is written by a physician after discussing the burdens and benefits of CPR with the patient or the patient’s surrogate decision maker.

Why would a person sign such an order?

At some point for late stage terminally ill patients, CPR will not be life-saving, and will only cause harm. If the physicians caring for you or your loved one believe strongly that this is the case, they will discuss with you why it is not being offered as an option.  Various methods of CPR often involve more than chest compressions and mouth-to-mouth resuscitation. CPR also might include the use of powerful drugs or electric shock to start the heart beating again, or might require the insertion of a breathing tube. Although CPR can save lives, it frequently does not work. Even if a person is resuscitated, he or she might suffer painful injuries during CPR or might be left in a worse condition than before. Also, people with terminal illnesses or other serious medical conditions might not want to have CPR performed on them, even if that means they might die as a result.

Some people believe that CPR offers hope. Such hope, however, is not useful if there’s no chance of restoring heart function. The resuscitation procedure is complex, costly, labor intensive (involving many health care providers), and causes physical damage to the patient. Such a demanding procedure should not be performed when there’s no chance of success.

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Physicians are not obliged to provide treatment that can’t possibly work, and the ethics of doing so are questionable. For example, a surgeon can’t be expected to perform surgery that has no chance of success; a physician can’t be obliged to prescribe medication whose use is not supported by evidence.

If you or a loved one are facing a life limiting condition, chances are that you will be asked to sign a DNR order at some point.  My father was asked to sign a DNR order for my Mom, who had late stage liver disease.  The doctor explained it as deciding not to perform heroic measures in an attempt to restart the heart and breathing, as attempts to restore heart function in a person dying from a progressive terminal condition rarely work and often just cause damage.  It is difficult but important to understand that cardiopulmonary resuscitation (CPR) rarely works in these circumstances because the heart has stopped from the burden of illness on the entire body and not due to a problem with the heart itself.

Discussing resuscitation decisions can be very difficult.  Often if feels unnatural not to do anything and everything to prolong life.   Open and honest communication with the medical team is essential, as are having all the facts. 

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It is not honest to offer CPR as an intervention that offers hope in the end stages of a terminal illness, and  therefore, it may not be offered by your physician.  If there is a disagreement among the patient, their family and the health care team, it would be a good idea to obtain a second opinion from another physician.  If the second physician doesn’t support the first physician’s decision, then care may be transferred to the second physician.

Finally, remember that CPR is a vigorous emergency procedure and it is not always successful. Experience has shown that CPR does not restore breathing and heart function in patients who have widespread cancer, widespread infection or other terminal illness.

Please share your thought on DNR orders in the comments below.

About this blog

10 Myths About Hospice

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This is a list compiled by Naomi Naierman and Johanna Turner from the American Hospice Foundation.

Hospice is a place. Hospice care takes place wherever the need exists — usually the patient’s home. About 70 percent of hospice care takes place where the patient lives.

Hospice is only for people with cancer. More than one-half of hospice patients nation-wide have diagnoses other than cancer. In urban areas, hospices serve a large number of HIV/AIDS patients.

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Increasingly, hospices are also serving families coping with the end-stages of chronic diseases, like emphysema, Alzheimer’s, cardiovascular, and neuromuscular diseases.

Hospice is only for old people. Although the majority of hospice patients are older, hospices serve patients of all ages. Many hospices offer clinical staff with expertise in pediatric hospice care. Almost 20% of hospice patients are under 65 years of age.

Hospice is only for dying people. As a family-centered concept of care, hospice focuses as much on the grieving family as on the dying patient. Most hospices make their grief services available to the community at large, serving schools, churches and the workplace.

Hospice can only help when family members are available to provide care. Recognizing that terminally ill people may live alone, or with family members unable to provide care, many hospices coordinate community resources to make home care possible. Or they help to find an alternative location where the patient can safely receive care.

Hospice is for people who don’t need a high level of care. Hospice is serious medicine. Most hospices are Medicare-certified, requiring that they employ experienced medical and nursing personnel with skills in symptom control. Hospices offer state-of-the-art palliative care, using advanced technologies to prevent or alleviate distressing symptoms.

Hospice is only for people who can accept death. While those affected by terminal illness struggle to come to terms with death, hospices gently help them find their way at their own speed. Many hospices welcome inquiries from families who are unsure about their needs and preferences. Hospice staff are readily available to discuss all options and to facilitate family decisions.

Hospice care is expensive. Most people who use hospice are over 65 and are entitled to the Medicare Hospice Benefit. This benefit covers virtually all hospice services and requires little, if any, out-of-pocket costs. This means that there are no financial burdens incurred by the family, in sharp contrast to the huge financial expenses at the end of life which may be incurred when hospice is not used.

Hospice is not covered by managed care. While managed care organizations (MCOs) are not required to include hospice coverage, Medicare beneficiaries can use their Medicare hospice benefit anytime, anywhere they choose. They are not locked into the end-of-life services offered or not offered by the MCOs. On the other hand, those under 65 are confined to the MCOs services, but most provide at least some coverage for hospice.

Hospice is for when there is no hope. When death is in sight, there are two options: submit without hope or live life as fully as ever until the end. The gift of hospice is its capacity to help families see how much can be shared at the end of life through personal and spiritual connections often left behind. It is no wonder that many family members can look back upon their hospice experience with gratitude, and with the knowledge that everything possible was done towards a peaceful death.

 

*A note for Canadians about cost:

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In Canada (where I live), we have universal health care, which provides basic health care without user fees. Yet the provinces control health care, and some charge a fee to access the health system. Palliative care is a basic service in all provinces and territories, so there’s no charge for palliative care in a hospital. Provincial and territorial governments usually cover the medications in this situation.

If a person doesn’t need palliative care or acute care in a hospital or institution, then alternatives are considered. If a person’s condition is stable, then care may be better provided elsewhere such as in a hospice, care home, or the person’s own home. Home care services provided by the government don’t have a fee. A care home or a hospice facility likely does charge a fee that usually depends on the facility or the individual’s income. Many Hospice facilities are run in conjunction with charity organizations and are subsidized by the charity and the government, and are very affordable.

If you’re concerned about the cost of care, some provinces and territories have special programs to cover all or some of the cost of medications for palliative care patients. These may apply to care at home, in a care home or in a hospice. Most of these government programs have criteria, which can be found on palliative care or provincial websites. Your health care team can tell you more about how the health care system works and specific resources in your region.

Have you had misconceptions or experience about Hospice Care? Please comment below with your thoughts.

Related:

Make a Living Will/Health Care Directive

End of Life Nutrition

Dying Process – Dehydration

Introduction to Palliative and Hospice Care

About Me

Create Your Own Blog

 

 

Introduction to Palliative and Hospice Care

 

 

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Palliative care, also known as end-of-life, or comfort care, is a specialized form of health care for patients who have life-threatening illness.

It can be provided at the same time as treatments meant to treat or cure the disease.

The goal of Palliative care is to enhance patients’ quality of life in a wholistic manner.  Symptoms such as pain, nausea, loss of appetite and confusion are prevented if possible, and treated with close attention. 

In addition, the emotional and spiritual needs of the patients and their families are supported. Palliative care prioritizes patient dignity and respects the social and cultural needs of the patients and families, which often includes help with advance planning and coordination of care among the caregivers involved (which may include volunteers, social workers and spiritual leaders in addition to medical staff).

Palliative care may be appropriate when the illness is diagnosed, throughout treatment, during follow-up, and at the end of life.

 

Hospice is a form of palliative care which is usually offered only when the patient is expected to live 6 months or less.

Hospice care can be arranged in a patient’s home or in inpatient hospice units.

Hospice care is appropriate when the patient, loved ones and the doctor decide together that the patient can no longer be helped by curative treatment.

The philosophy of hospice is to affirm life, and neither hasten nor postpone death.  The care focuses solely on supporting comfort and quality of life at the final stage of life. In essence, Hospice helps patients live out their remaining days to the fullest and to die on their own terms.

Have you had an experience dealing with Palliative or Hospice care?  Please leave a comment below and share your thoughts.

 

You may also be interested in:

10 Myths About Hospice

A Hospice Reflection

Dying Process – Dehydration

End of Life Nutrition

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Make a Living Will/Health Care Directive

About Me

Create Your Own Blog