Heart Failure & Hospice

Patients with congestive heart failure who elect hospice live longer than those who don’t.  These were the findings of a defining 2007 study published in the Journal of Pain and Symptom Management.  Other diagnoses also experience longer prognosis with hospice, but none longer than the 81 day extension of life in heart failure.

Many factors probably contribute to the increased longevity.  Hospice care increases monitoring in the home and gives psychological, emotional and spiritual support from friendly visitors.  This holistic attention may increase the desire to live and reduce the sense of being a burden to one’s family.

Skipping the ER

Heart failure is the diagnosis most commonly associated with hospitalization.  By some estimates, patients with heart failure are readmitted at a rate of nearly 50% within six months.  For some patients, knowing that they have 24-hour access to nursing advice and visits for management of symptoms gives them a welcome alternative to the emergency room. 

Who is Appropriate?

Medicare guidelines include:

• Patient is optimally treated with vasodilators or unable to tolerate them.
• Patients with conditions usually treated with surgery are either ineligible or decline it.
• Patient is Class IV on the New York Heart Association scale: unable to do any physical activity without discomfort and symptoms may be present at rest.
• If ejection fraction is available, 20% or less is appropriate for hospice.
• Co-morbidities play a large role in estimating prognosis.  The following co-morbidities support a prognosis of 6 months or less in conjunction with the conditions listed above:
• Symptomatic arrhythmias resistant to treatment
• History of cardiac arrest, resuscitation or unexplained syncope
• Brain embolism of cardiac origin
• Concomitant HIV disease

The extra time that hospice can give patients may be especially important to patients and families trying to find resolution and peace at the end of life.  

Questions to Ask Patients

• Do you have discomfort when physically active? or Does physical activity give you more discomfort?
• Do you get short of breath when you are lying down?
• Do you ever wake up at night feeling short of breath?
• When you are resting in a chair do you ever feel short of breath, perspire or have chest pain?
• Do you have any swelling?
• Do you need help with activities like dressing, bathing, walking or eating?

Supporting Documentation

• Cyanosis
• Rales
• Dusky nail beds
• Tachycardia or bradycardia
• Hyper- or hypotension
• Jugular venous distension
• Liver enlargement
• Cachexia
• Orthopnea
• Paroxysmal nocturnal dyspnea
• Decreased ejection fraction
• Weight gain due to fluid retention

This article was originally published in Pathways Physician & Health Professional Bulletin - Issue 24.  To download this issue in PDF format, or past issues, visit our newsletter archives online at www.pathwayshealth.org/publications.

Hospice Facts & Figures: 2010 Snapshot

The National Hospice and Palliative Care Organization (NHPCO) has released facts and figures for 2010. Key statistics in the report, which mainly compares data from 2009 to 2010, include:

• 1.58 million hospice patients served
• Average length of service was 67.4 days
• Median length of service 19.7 days
• 66.7 % patients died at home
• 21.9% died in hospice inpatient facilities
• 11.4% died in acute care hospitals
• 87.2% of hospice patients were 65 or older: 38% were 85 or older
• 35.6% deaths with diagnosis cancer; 13% deaths with diagnosis dementia

The percentage of non-white Caucasian patients increased in every category: 11% multiracial or other race in 2010, compared to 8.7% in 2009; 8.9% v. 8.7% Black/African American; 2.5% v. 1.9% Asian, Hawaiian, other Pacific Islander; and 0.3% v. 0.2% American Indian or Alaskan native. 
 

Source: www.nhpco.org/files/public/Statistics_research/2011_Facts_Figures.pdf

This article was originally published in Pathways Physician & Health Professional Bulletin - Issue 23.  To download this issue in PDF format, or past issues, visit our newsletter archives online at www.pathwayshealth.org/publications.

Hospice Care Guide - Questions & Answers - Part Two

Pathways will be sharing the answers to some of the most commonly asked questions regarding hospice care beginning with our last post on April 18th.   

Can we visit our own doctor?

Yes.  Your primary care doctor remains your doctor under hospice care.  Your doctor gives us direction about your care.

Will someone come to stay with us?

No.  Hospice does not provide shift care or 24-hour care.  Team members make visits. But a nurse is available by telephone 24-hours a day and can come at any time if a visit is necessary.

Do I have to give up my medications?  

No.  Hospice will pay for your medications that are related to the terminal diagnosis.  If there are medications that hospice does not cover, you can continue to get them and take them as you always have.

How will hospice manage pain if it occurs?  

Hospice usually treats pain aggressively.  We know that pain interferes with eating, sleeping, visiting and general quality of life. Uncontrolled pain can also shorten life.

The patient and family are always in control of their care and can decide how they want to treat pain.

Will my loved one be asleep all the time?   

Not usually.  Some diseases cause the patient to be less alert.  If pain is severe, pain medicine may make a patient sleepier than usual for two or three days, then they will be as alert as the disease lets them be.

Does hospice do anything that will make my life shorter or longer?    

No.  Hospice tries to improve life in the final months or weeks, but does not try to shorten or lengthen life.  Research shows that with the extra care from hospice people who go on hospice usually live longer than those who do not.

What about help with practical things like grocery shopping?   

You can have a volunteer if you like.  Volunteers can help you with practical matters such as shopping, or they can stay with your loved one while you go out.

What if caring for my loved one at home becomes too much for me to do?    

If you feel you cannot continue caring for the patient at home, the hospice social worker can assist you to find a skilled nursing facility or residential care facility.

Be sure to check back in with us next week for the next part of our blog series on commonly asked hospice questions and answers.  

At the end of the blog series we will post a downloadable PDF with all of the questions and answers covered in this blog.

Hospice Care Guide - Questions & Answers - Part One

Pathways will be sharing the answers to some of the most commonly asked questions regarding hospice care beginning this week.  

We're Here to Help

We know that when it is time to think about hospice care, you need your questions answered.

Most of us have little first-hand knowledge of hospice, and need facts to make the best possible health care decisions.  Here we’ll tell you about hospice care, and answer some of the common questions that people ask. 

We welcome your call if you have more questions or would like to schedule an informational visit.

Call Pathways toll-free at 1.888.755.7855.

What is Hospice?

In the United States, hospice is a kind of care, not a place.  Hospice is provided wherever you live.  It is specialized care for people whose doctors believe they probably have six months or less to live. 

People nearing the end of life often have many changes happening in a short period of time.  There may be changes in medications, sleep habits, fatigue, diet, and family roles, to name just a few.  It is the job of hospice to address each of these changes as they occur, to make the quality of life the best it can be. 

Who pays for hospice?

Hospice is a benefit covered under Medicare, Medi-Cal, senior HMOs, regular HMOs and private insurance.  Hospice pays for all medications, medical equipment and supplies that are related to the life-ending disease.

Is hospice care just for people with cancer?

No.  Most patients on hospice do not have cancer.  They may have emphysema, Alzheimer’s, heart failure, kidney disease, Parkinson’s, or any of many other diseases.  Some people do not have a certain disease, but seem to be declining from old age.

How can I manage to care for my loved one at home?

Hospice nurses and other team members provide care during their visits, and they will teach you what you need to know to provide care at home. 

Who comes to visit us?  

Hospice care is provided by a team.  Each patient has a nurse case manager.  You can decide if you would also like a hospice aide to give personal care, a spiritual care counselor to talk to, a social worker to assist with arranging practical matters, or a volunteer to run errands or keep the patient company. 

Be sure to check back in with us next week for the next part of our blog series on commonly asked hospice questions and answers.  

At the end of the blog series we will post a downloadable PDF with all of the questions and answers covered in this blog.

Grief: A Process

Feeling a Loss

Grief is the emotional suffering caused by a loss. It often begins before the loss, like the sadness upon learning that a resident or a loved one does not have long to live.  Spouses and others grieve for the companionship they will lose and dreams that won’t happen, that life will be changed forever.

Natural Process

Grief is a natural part of life. People express it in their own ways.  There is no timetable for grief and there is no right or wrong way to grieve.  It can come and go. 

Grief takes different forms at different times.  At first, the bereaved person may feel disbelief and expect to see their loved one even though they know the person is gone. 

They may also feel anger at being “abandoned” by the loved one.  Or they may feel guilt—for the anger, for still being here, or for things they may have said or done (or didn’t say or do).  These feelings are all normal.

When to Get Help

But there are times when grief is so intense or so prolonged that the health of the bereaved person is at risk.  There are some signs that let us know a person may need help in coping with their grief.

Although deep sadness is a natural part of bereavement, in some individuals death triggers a lasting depression that may cause withdrawal from friends and family, thoughts of suicide and lack of energy.   This is one of the times when outside help is needed.

Mild weight loss, fatigue, insomnia and anxiety may be expected early on.  But it may be time for the grieving person to see their doctor or a mental health professional if after three months or so you see:

• Intense feelings are not starting to lighten.
• Excessive weight gain or weight loss.
• More than 12 or less than 4 hours sleep a night.
• Constant crying.

For more information about grief support services available at no cost from Pathways, visit us online at www.pathwayshealth.org or call 1.888.755.7855.

How Morphine Can Help in Heart Failure at the End of Life

Morphine is most often used as a pain reliever.  But for heart patients, it is often used for shortness of breath.  There are several ways that morphine interrupts the cycle of breathlessness.

• Morphine lowers the breathing rate in the brain’s respiratory center. This means the heart doesn’t have to work so hard to supply blood to the chest muscles for breathing.  It reduces excessive breathing drive.
• Morphine widens blood vessels in the arms and legs.  Pooling blood in the extremities reduces the amount of blood that returns to the heart.  This means the heart doesn’t have to pump as often—it can rest more.  When the heart doesn’t have to pump so hard, it also needs less oxygen—so the resident doesn’t have to breathe as hard.
• It eases anxiety, and when a resident is less anxious, he or she will breathe more calmly.  If you breathe more slowly, you are less anxious.
• When we are in pain, we tend to breathe faster and harder.  So relieving pain also reduces respiratory rate.

Used correctly, morphine is safe.  Addiction is very, very rare.  The chance of becoming addicted is so small that it is considered unethical to withhold morphine because of a fear of addiction.

But if we don’t know how opioids like morphine, fentanyl, Vicodin or Dilaudid work, we may mistake initial responses.  If an opiod is new to a person, he or she may be sleepy for the first 2 or 3 days—especially if they have not been sleeping well (maybe because of shortness of breath or pain).  When symptoms are relieved, the resident may want to “catch up” on sleep.  After a few days, the sleepiness wears off.

At the end of life, morphine is the most important medicine for providing comfort to heart patients.  It reduces the breathless feeling that can be so frightening to people at the end of life.

Antidepressants in Dementia

As many as 20% of patients with dementia may also have depression.  The usual treatment is a selective serotonin reuptake inhibitor or a noradrenergic and specific serotonergic antidepressant.  But some research has questioned the effectiveness of these treatments.

In a study published in The Lancet, (volume 378, Issue 9789, pages 403 - 411, 30 July 2011), Sube Banerjee MD, a London-based expert in old age psychiatry, and his colleagues concluded that because there was an absence of benefit compared with placebo and increased risk of adverse events, the practice of using these antidepressants should be reevaluated.

“Depression is one of the most important co-morbidities in dementia.  It is a source of great distress yet the treatments we use are not proven,” said Dr. Banerjee.

In their parallel-group, double-blind, placebo-controlled study of more than 326 patients with Alzheimer’s dementia, decreases in depression scores at 13 and 39 weeks did not differ between 111 controls and 107 participants allocated to receive sertraline (Zoloft) or 108 who received mirtazapine (Remeron).

“I am surprised by just how unequivocal our findings are,” said lead author Banerjee, professor of mental health and aging at King’s College London, Institute of Psychiatry, United Kingdom.  “The present practice of use of these antidepressants with usual care for first-line treatment of depression in Alzheimer’s disease should be reconsidered,” write the authors.

“The message is to think before using antidepressants for depression in dementia.  It may well be that these symptoms will resolve with the problem-solving and information-giving that is implicit in good-quality dementia care,” added Dr. Banerjee. The investigators suggest that antidepressants be reserved for “individuals whose depression has not resolved within 3 months of referral, apart from those in whom drug treatment is indicated by risk or extreme severity.”

Funding for this study was provided by the UK National Institute of Health Research HTA Programme.

Discussing Goals of Care with Very Ill Patients

“Words matter. What clinicians say and how they say it hugely affect patients. Communicating about emotionally and medically complex topics such as advance care planning, preferences for care, prognosis, and death and dying is challenging,”   Steve Pantilat, MD, Professor of Clinical Medicine and Director of the Palliative Care Unit at UCSF wrote in a 2009 JAMA article.

Pantilat recently spoke to an audience of more than 100 physicians and other health care professionals at a Nov. 29 ethics conference held at El Camino Hospital in Mountain View on “Better Words to Say: Communicating with the Very Ill Patient.”

“It’s not about the patient’s willingness to have this kind of conversation, but about [physicians’] willingness to have the conversation,” said Pantilat.
 
Discussing end-of-life issues with patients is not associated with depression, sadness, terror or worry according to research done by Wright and published in JAMA.  In fact, this sort of conversation leads to better quality of life, fewer invasive interventions and better outcomes for caregivers.  But how do we go about having the conversation?  Here are some of the highlights of that talk and some useful approaches Steve Pantilat has learned over the years.

Ask open-ended questions to establish what the patient and family know.
 
Examples of questions he asks are: “When you think about what lies ahead, what worries you the most?” and “When you think about the future, what do you hope for?”
 
The answers to these questions may be very different than you anticipated and may guide care decisions.  For instance, if a patient says he wants to have chemotherapy and visit his home town, the physician may recognize that the visit may not be feasible after chemotherapy, and that if it will not significantly change the outcome of the disease, perhaps the patient should take the trip first.

Listen and sit down.
 
Pantilat referred to a well known study done in the 1970s that demonstrated that patients perceived their physicians’ visits to be much longer than they actually were when the physician sat down to talk with them.

Pantilat suggests that physicians listen for at least two minutes before talking (which he admits may seem interminable at the time).  He emphasizes the value of not interrupting since most important things don’t come out at the very beginning of a conversation.

Avoid jargon, use simple language and check understanding.
 
Patients will often nod as though they understand although they are clueless to the meaning of what you are saying.  Pantilat says that the answer is usually “No” to the question “Do you have any questions?”  But he has noticed a distinct difference when he subtly rewords the question to say “What questions do you have?”

“Accuracy is not critical,” said Pantilat.  Patients and families don’t need to know an exact prognosis, but they do need a realistic frame of reference.  He suggests using ranges such as “hours to days,” “days to weeks,” or “weeks to months.”  One person may interpret “not long” as days while another may think it refers to a year.

Offer a prognosis. 

“False hope is not hope because it is not based in reality,” said Pantilat, reminding his audience of the research published in the NEJM that found that TV patients had a 79% rate of survival with quality life after CPR, whereas in real life the numbers are far grimmer.  The problem is that the public gets its information from television.
 
Discuss death explicitly.
 
Talking about death can be a great relief, says Pantilat.  He suggests practicing difficult conversations and in this setting suggests phrasing such as, “Many patients with lung cancer tell me they think about the possibility of dying.  They have questions about this.  How about you?”

Remain sensitive to the patient’s culture.
 
Pantilat cautioned about assuming all persons of a particular culture have similar beliefs and suggests the solution lies in asking, “In your family how do you make medical decisions?”  His experience has told him that patients often know much more than physicians or families realize.   Although they may never have been spoken to directly about their disease, the visits to a cancer center, increasing treatment, arrival of family members from afar and a host of other clues tell them about their condition.

Pantilat does caution that we should always ask how much the patient wants to know, regardless of what the family has said.  To be sensitive he often asks, “I have information about your condition.  Some patients want to know the details, others prefer to have me talk to someone else.  How do you feel?”

Use better words.
 
There is never a time when it is appropriate to say, “There is nothing more we can do.”  Pantilat suggests instead, “There is no more we can do to cure your disease.”  And rather than arguing with family members about the futility of treatments, Pantilat likes to put himself on their side by saying, “I wish there was something we could do to make your cancer go away.”

Ask helpful questions.

Questions such as, “Would you like us to do everything possible?” are not helpful and will always be answered “Yes.” However, “everything” may mean all possible curative medical treatments to the physician, while the family interprets it to mean all possible efforts aimed at keeping their loved one comfortable.  Pantilat finds it clarifying in this situation to ask, “How were you hoping we could help?”

Be aware of your non-verbal communication.
 
Asking someone if they have any other questions while your hand is on the door sends a loud message and the answer will usually be, “No.”

Pantilat concluded by acknowledging that this process is usually more than one conversation and that physicians should share the responsibility with others such as the palliative care team, social workers, and chaplains.  Discussions about goals of care are good for patients and families: Use better words.

Dysphagia & Managing Oral Secretions

As residents near the end of life, one of the signs most often encountered is the loss of the ability to swallow.  This article will look at how to manage this problem.

How It Begins

It often begins before the resident is actively dying with dysphagia, or trouble swallowing, usually caused by weakness and poor neurologic function.  The resident may cough, clear his throat, or sputter while eating or drinking.  Thickening fluids may help to start with, since thicker liquids are less likely to pass into the trachea which can lead to aspiration pneumonia.

Preventing Pneumonia

Later, even making fluids thicker is not enough.  The gag reflex and reflexive clearing of the throat decline.  It is probably time to stop feeding the resident at this point to prevent pneumonia.  Usually this comes at the same time as loss of appetite; the resident does not experience hunger any longer and though feedings stop, it does not cause distress.  It is important to take the time to explain this process to the family.

Noisy Breathing

As the resident becomes less aware and it is clear that death is nearing, those at the bedside may hear a rattling, gurgling, crackling noise with each breath.  This is caused by the build-up of secretions in the throat; the resident cannot swallow them the way most people normally do.  This noise is sometimes called a “death rattle,” (although this term should never be used around families and caregivers).

Medications

These noisy respirations can be very disturbing to family and caregivers.  It may be helpful to try to dry the secretions by using an anticholinergic medication such as atropine or scopolamine.

 
Atropine drops (normally used in the eye) may be ordered for administration under the tongue and scopolamine patches (often used to prevent motion sickness) can be applied behind the ear.  Both seem to work equally as well, and neither affects survival time.  These drugs can be used in the unconscious dying patient before noisy breathing begins to prevent it from happening.

Non-Drug Treatments

Repositioning the resident can help to clear the secretions.  Turning the resident far to one side and then the other (to a semi-prone position) may allow the secretions to drain through the mouth (be sure to have a towel ready for drainage).  Raising the foot of the bed very briefly while on the side may also help, but never leave the resident in this position for more than two or three minutes at the most.

Suctioning

Oropharyngeal suctioning is not recommended.  Suctioning can be very distressing to the resident and family, and it is often ineffective since the secretions are usually beyond the reach of the suction catheter.  Suctioning can also stimulate more secretions.

A Quick Review of COPD

A Progressive Disease

Chronic Obstructive Pulmonary Disease is a lung disease that causes a blockage or narrowing of the airways.  This results in decreased ability to move air in and out of the lungs. The disease has a slow, progressive course and is irreversible.

Statistics

COPD is the 4th leading cause of death in the US: 120,000 Americans annually.  It is expected that by 2020, COPD will become the 3rd leading cause of death worldwide.  Men are more likely to have COPD than women, and it usually occurs in those over 40 years old.

Types

There are three types of COPD and all of them require the patient to work very hard at breathing.

• Emphysema: Air sacs (alveoli) of the lungs are damaged and enlarged.  This reduces the amount of surface area for the exchange of oxygen and carbon dioxide.  Less oxygen can move into the body and less carbon dioxide can be expelled.
• Chronic Bronchitis: Inflammation of the bronchial tubes which can cause them to swell.  This can leave less room for air movement.
• Bronchiectasis: Permanent widening of the large air tubes which begin at the bottom of the trachea and branch into the lungs.

Causes

The most significant risk factor is, of course, smoking.  The American Lung Association estimates that 80% to 90% of people diagnosed with COPD are chronic smokers.  Secondhand smoke is also a major factor, causing 3,400 lung-related deaths annually.  Research also shows a link between air pollution and work-related exposure, such as coal mine dust, silica, cotton and grain dust.

Symptoms

Most symptoms include: breathlessness with any activity, chronic cough, increased sputum production, wheezing, chest tightness and frequent chest infections.

Other signs and symptoms may include swelling, weight gain and obesity, (which may be a side effect of medication therapy), a round barrel chest, coughing blood, and cyanosis (bluish coloring often seen around the mouth).

Diagnostic Testing

To make a diagnosis of COPD, a complete assessment must be taken including family history, environmental and occupational exposure and smoking history. Additional tests may include:

• Blood work such as arterial blood gases, hemoglobin and hematocrit levels
• Chest x-ray
• Pulmonary function tests
• Bronchoscopy
• Pulse oximetry

Treatment

The main treatments for COPD include medications (bronchodilators, expectorants, antibiotics and corticosteroids), oxygen therapy, pulmonary rehabilitation, and at the end of life, morphine to ease shortness of breath.

People Want Palliative Care Info

Education Gap

78% of Americans think palliative care and end-of-life treatment should be a part of public discussion, and a whopping 93% believe such decisions should be a top priority for the US healthcare system, according to a survey released this year conducted by the news magazine National Journal and the Regence Foundation.

More than 70% of the respondents agreed with the statement: “It is more important to enhance the quality of life for seriously ill patients, even if it means a shorter life.” While 23% said it was “more important to extend life through every medical intervention possible.” 

Panelists at the health summit at which the data was presented agreed that patients want to make their own decisions.  “It’s really about control,” said John Rother, executive vice president of policy, strategy, and international affairs at AARP.  The survey’s findings suggest many Americans want to better understand what is available to those who have few options left.

Around 23% of those surveyed said they thought the law allows government to make end-of-life decisions for older adults.  Only 40% correctly answered that the law does not include “death panels,” while 36% said they didn’t know.

These results illustrate the huge need for education. Of those surveyed, 54% said their doctor or healthcare provider was the source of information on end-of-life issues, and 75% said they got their information from family and friends.  Only 33% said they trusted politicians and elected officials for accurate information.

Those polled gave the US healthcare system a “C” grade of 5.5 on a scale of 1 to 10.  36% scored the system 7 - 10; 41% rated it 4 - 6; 21% gave scores of 0 - 3.

Pathways has a robust palliative care program under the auspices of our Home Health department.  It is designed for those with serious illness who may still be receiving curative treatment and who may have up to 12 months to live.

More information about this survey can be obtained at: http://www.nationaljournal.com/healthcare/no-death-panels-please-but-poll-shows-americans-can-handle-end-of-life-chat-20110308

Should I Tell My Patient Death Is Imminent?

Does Not Increase Anxiety

When your patient with cancer is terminally ill and you have a good sense of the short prognosis, should you tell him?  It is a well-established practice for American physicians to be forthcoming about prognosis, but not so well established when death is just around the corner.

A study recently published online suggests that keeping the patient fully informed in the final days means that they are more likely to have their preferences met and to die in their preferred place.  Their family members are also more likely to be prepared for the death and to be offered bereavement support.

Researchers in Sweden looked at more than 1,000 cases in which patients were informed of their imminent death and compared this with a similar number who were not informed.  Results showed no differences with regard to pain control, nausea, anxiety, confusion, respiratory tract secretions and other end-of-life symptoms.

“People vary about the extent they want to know the truth, if they want to know at all, and in their understanding of what constitutes telling the truth,” the authors wrote.  But, they concluded, “being informed about imminent death does not lead to more unrelieved pain and anxiety during the last week of life.”

The study concludes that, “providing information of imminent death to a patient with cancer at the end of life does not seem to increase pain or anxiety, but it does seem to be associated with improved care and to increase the likelihood of fulfilling the principles of a good death.”  

The study appears in the Journal of Clinical Oncology, July 2011.

Visiting a Friend or Loved One with Dementia

Dementia is a progressive disease that is measured not in months, but in years.  As the disease progresses it may become difficult to visit the patient—he may not recognize you, she may not be able to converse with you, or you don’t know if the person even realizes you are there.

Why Visit?

You may question if there is any reason to visit any more.  With dementia it can be hard to know how to be supportive, especially at the end of life.  

There is a good reason to visit—you can make a difference.  The focus of visits shifts; instead of expecting an exchange of pleasantries, your motivation becomes, “What can I do to improve quality of life?”
 
Your visit really begins with you, at home.  You may want to think about your feelings.  Am I frightened I too will end up with dementia? Am I afraid of the end of life?  What do I want to accomplish in my visit?

Planning the Visit

Visiting a person with dementia can be frustrating and unrewarding when you feel as though there is nothing you can do.  You may be able to make the visit more meaningful with some preparation.

Gather together some supplies so that you are prepared for whatever the situation is when you arrive.  A few ideas are:

• Knitting, a crossword or a book to read if the patient is sleeping
• A picture book with large colorful or interesting images
• Interesting photos someone has sent you in an email
• Music you know the patient likes
• A newspaper column, such as Dear Abby or the sports page to read aloud
• A photo album
• A special memento
• A letter from a mutual friend to share
• A nail file and polish for a manicure
• The patient’s favorite perfume
• A favorite food
• Lotion for a hand or foot massage
• A pet, if allowed

The sky is the limit.  Use your imagination and everything you know about the person to come up with ideas of things to share.  The resident may want to listen to news about her book club, his former poker buddies or the doings at church.

The Visit

Begin with the basics.  The visit will be more successful if the resident is clean and dry, not hungry, and comfortable.  Ask for help if needed.
 
Pain can sometimes appear as negative behavior.  People with dementia may withdraw, strike out or display other “bad” behaviors when in pain.  If you have seen behavior changes that you suspect may be due to discomfort, you may want to ask the caregiver for a trial of pain medicine.

Think about providing comfort through the senses.

Touch

We all need to be touched, but seniors are often deprived of this essential element to wellbeing.

• Our society is youth-centered and may look at wrinkled skin as ugly, not weathered with experience.
• Among hospitalized patients, the only ones touched less than the elderly were people who were psychotic.

Touch can be “instrumental;” that means required to carry out activities such as bathing or dressing.  But research shows that people with dementia can tell the difference between this and “expressive” touch.  Expressive touch is when we hold hands, put an arm around the person, or give a back rub or hug.  This conveys acceptance, nurturing and caring.

Expressive touch helps the elderly feel less isolated, dependent and depressed.

• One researcher found that it also made the toucher feel better.  They felt this non-verbal communication conveyed trust, reassurance, and love, and that it instilled hope.
• Others described touch as making a person feel psychologically worthy and have a sense of being cared for and cared about.
• It is no coincidence that the ultimate form of punishment is solitary confinement—no touching.

Caring touch can trigger the brain to release endorphins and serotonin—natural chemicals that suppress pain and depression.  This is one reason massage can lower the perception of pain.

• Massaging a loved one’s hands or back can help significantly while waiting for pain medicine to work.
• Brushing the resident’s hair and applying lotion have the same affect.

Hearing

We know that hearing seems to remain intact until the very end of life.  This gives us an opportunity for providing comfort.

• Soft music can be very soothing to an agitated resident.
• If the resident has been religious, he may appreciate hearing hymns and spiritual music.  Bring in CDs or tapes of his favorites and a CD player to play them on.
• You can even sing or hum a familiar tune.
• Bring in a music box.

Communication
 
If you are not close, calling residents with Alzheimer’s disease “sweetie,” “dear,” “cookie,” or “honey” may cause more resistance to care.  Experts have known for a long time that mentally competent elderly residents in nursing homes are irritated by being “talked down to.”  Recent research shows people with dementia are more agitated when talked to this way.

What they found was that residents were more resistant if the communication was what they dubbed “elderspeak.”

• Saying things like, “Are we ready for dinner?”  implies that the person isn’t able to act independently.  An alternative would be, “Are you ready for me to help you with your dinner?”
• The tendency of caregivers to use “elderspeak” increases with the caregivers perceived level of infirmity of the resident.
• We need to remember that residents were high functioning adults.  The more we remember their earlier lives, the more we respect them as people than as a disease.

Just chatting can be very reassuring.  “I spoke with Michael today, back in Virginia.  He says he and Alice are going to take a trip to Vermont.  They are going as soon as the snow melts.  It’s February now, so it may be a couple of months.”

Maintain the resident’s dignity in small ways: use terms like “disposable briefs” instead of “diapers.”  Remember to speak slowly.  People with dementia take longer to process what you have said.
 
Sense of Smell

This sense is so basic that when we smell a certain odor, it can bring back memories from decades ago.

• Aromatherapy takes advantage of this by providing pleasant smells that might bring back pleasant memories.
• Bring a rose, a lavender sachet, or a scented candle that smells like pumpkin or apple pie.
• A favorite perfume or aftershave can brighten spirits.

Taste

• Bring in a favorite food or drink.  The resident may love Fritos or M&Ms and they won’t be on the menu in assisted living.
• Cleaning the mouth with minty toothpaste or mouthwash on a 4x4 may be refreshing.

We have to be very careful about anything in the mouth at the end of life.  With dementia, all the muscles get weaker and weaker—including the muscles for swallowing. 

• Food or fluids can easily get into the airway, causing aspiration pneumonia.

Textures

• A resident in a facility has little chance to experience unusual textures, such as soft fur or a smooth, cool stone.  A pet or even a stuffed animal may provide comfort.
• Wrapping someone’s hands or feet in a hot, wet towel might feel very soothing and relaxing—the spa treatment!
• Find a way to warm a flannel blanket to wrap the resident in.
• Smooth the sheets or put cool, clean sheets on.  Change the pillow case or turn over the pillow.
• Open a window to feel a breeze.

Imagination

Use your imagination.  Think about what would bring you comfort.  What would feel good to you?  For each visit plan a simple, new, creative way to bring pleasure, serenity or comfort.  Quality of life will improve for both of you.

Want to Learn More?

Visit our website's Caregiver Resource page for more information and helpful hints when caring for a friend or loved one with dementia. 

Early Discussions About Prognosis Urged

Individualizing Care

The American Society of Clinical Oncology (ASCO) is calling on physicians, medical schools, insurers, and others to help improve quality of life for people with advanced cancer by discussing the full range of palliative care and treatment options soon after patients are diagnosed with advanced, incurable cancer. 

Currently, physicians talk about prognosis early in the course of advanced disease less than 40% of the time. (In addition to guidelines for physicians, ASCO also released a guide to help patients broach the subject of prognosis and care options with physicians.) 

Critical issues are tackled in a comprehensive article published in the Journal of Clinical Oncology.  

They include:

• Consideration of clinical trials
• Initiating conversations about poor prognosis
• Guidelines for discontinuing cancer-directed treatments
• Individualizing approaches to care
• Empowering patients
• Maximizing quality of life

“Patients with advanced incurable cancer face complex physical, psychological, social, and spiritual consequences of disease and its treatment. Care for these patients should include an individualized assessment of the patient’s needs, goals, and preferences throughout the course of illness,” say the authors.  

The complete article can be accessed at:  http://jco.ascopubs.org/content/early/2011/01/24/JCO.2010.33.1744.full.pdf+html

Time for Hospice?

Pathways can assist you in managing the care  of complex patients, while providing care at home. 

We can help you determine the likely prognosis and if the life expectancy is six months or less, we can suggest ways to approach the patient and family about changing the focus of care from cure to comfort.

If you like, Pathways can have a nurse visit to explain hospice to appropriate patients and families, so that they will have sufficient information to make an informed decision about using their hospice benefit.

When It Comes to Hospice, What's In It for Families?

We Know What Patients Get

The multiple advantages of hospice for the family are often lost in our natural concern for the patient.  We know the patient gets to stay at home with expert pain and symptom control as well as spiritual and emotional support.  We know they have volunteers for companionship and the safety and energy conservation provided when a home health aide assists with personal care.  And of course, there are the extras like massage with aromatherapy and music therapy.

“Unit of Care”

But how does the family benefit?  In the very unusual insurance benefit that is hospice, Medicare defines the “unit of care” as the patient and family—and family is loosely defined to include close personal friends and significant others.

Relief from Caregiving

One of the pluses caregivers love most is relief from being the caregiver.  It may be a couple of hours at the bank and beauty shop while a volunteer sits with the patient; it may be a 5-day paid respite stay in a skilled nursing while the caregiver recharges her metaphorical batteries; it may be a home health aide to do the physical care of bathing, dressing, shaving and linen changes several times a week; or it could even be a volunteer to grocery shop, run errands or walk the dog.

Emotional and Spiritual Support

A family at odds about healthcare goals may have a conference facilitated by a hospice social worker.  There is some financial relief as hospice assumes the cost of medications, equipment and supplies related to the terminal illness—even over-the-counter products and disposable briefs.  Then there is the assistance with funeral plans or insurance issues from skilled medical social workers—and sometimes a spiritual care counselor to preside over a memorial service or to pray with family members.

Easing the “Burden”

Those approaching the end of life often express regret over their perception of being a burden.  It is a relief to them to find out that family members can call hospice 24 hours a day to talk to a nurse or arrange a visit if needed, and that their families can have the same spiritual and emotional support that they get.  Patients are also comforted to know their family will have 13 months of support in their bereavement.

Time

And perhaps most important of all, because people who opt for hospice often live longer, patients and families have a few more cherished days or weeks to share this precious finale to life.

And Benefits for the Physician?

• Physicians get fewer calls at night and on weekends
• They have extra eyes and ears in the home. 
• Doctors get to be the heroes by giving patients and families better quality, and often quantity, of life.
• Physicians have hospice medical directors with whom they can consult on complicated symptoms.  

Research Confirms Many Live Longer with Hospice and Palliative Care

Higher Quality of Life Reported By Palliative Care Patients, Study Reports

A recent study published in the New England Journal of Medicine found that among patients with non-small-cell lung cancer, those who received palliative care lived, on average, almost two months longer than those who received standard care. Researchers also found that the patients receiving palliative care reported a higher quality of life through the final course of their illness.

They also found that when patients received palliative care services, they were more likely to elect hospice services. "With earlier referral to a hospice program, patients may receive care that results in better management of symptoms, leading to stabilization of their condition and prolonged survival," wrote the authors of the study released August 18, 2010. 

Pathways Provides Palliative Care

Pathways has a unique and vibrant Palliative Care program that is provided through Home Health. The criteria are that the patient has a prognosis of 12 months or less, has a skilled need (such as symptom management), and that he or she finds leaving home a considerable and taxing effort. (Patients may occasionally visit the barber, attend a special event, go for a drive or attend religious services and still be considered homebound, thus meeting the CMS criteria.) Patients may be receiving active, curative treatment simultaneously with Palliative Care. 

“There’s an inaccurate perception among the American public that hospice means you’ve given up,” said J. Donald Schumacher, president and CEO of the National Hospice and Palliative Care Organization. “Those of us who have worked in the field have seen firsthand how hospice and palliative care can improve the quality of and indeed prolong the lives of people receiving care.” Schumacher added that “The time to learn about these services is before a person is in a medical crisis. Patients and families must learn about these options of care as soon as possible.” 

A Growing Body of Evidence

A 2004 study found patients with 16 of the most common terminal diagnoses lived around 20 days (Journal of Pain and Symptom Management, September 2004). In 2007 a study of 4,493 patients found patients lived an average 29 days longer with hospice (JPSM, March 2007). This latest study adds to the body of evidence showing that many patients live longer with hospice and palliative care, and as a rule both patients and surviving families report better quality of life.

Spiritual Support in Hospice

Meaning of Life

When a patient may be facing the end of life, spiritual issues often begin to surface—people begin to ponder the meaning of their lives. Hospice is intended to care for not only the physical wellbeing of the patient, but the emotional and spiritual aspects as well. Toward that holistic end, Medicare mandates that hospices provide spiritual support (as they do in the military, another place where death is a possibility).

Spirituality is about those aspects of life that are not material; it is about relationships and finding meaning. Each of us has a spiritual side; some express it through religion, some in other ways.

But when faced with life-threatening illness, many experience feelings of fear, powerlessness, helplessness and despair, which are often expressions of spiritual distress.  Hospice spiritual care counselors are knowledgeable about a wide range of religious and spiritual traditions. They may be a presence in the home, or they may be the connection to the patient’s own faith tradition.
 
A Pathways Hospice Spiritual Care Story

Years ago, Pathways had a Vietnamese patient who had emigrated after the Viet Name war, in which he was an army colonel. His cancer pain was never seemed completely managed, despite multiple approaches.

One day he mentioned he wished he had not stopped practicing his Buddhism and wanted to pray with priest, however he was too weak to leave home. A hospice spiritual care counselor began networking until he found a Vietnamese Buddhist nun who came to pray with the patient.

Interestingly, not only did the patient’s anxiety decrease dramatically, but his pain was gone after these visits.

How Spiritual Support Can Help

Some of the many ways that hospice spiritual care counselors can help as requested by the patient or family are by:

• Giving unbiased spiritual or religious support for patients or family members
• Helping to identify and resolve spiritual concerns affecting the patient or family
• Exploring the “meaning of life” questions
• Administering sacraments
• Caring listening
• Contacting clergy or a spiritual leader of a specific faith community for the patient
• Exploring ways to prepare for “letting go” of this life in preparation for another
• Being another caring presence in times of need or distress

For more information about Pathways Hospice Services, please visit our website at www.pathwayshealth.org or email: info@pathwayshealth.org.