Hospice Care Guide - Questions & Answers - Part Three

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

Can we go to the hospital?     

Yes.  You can always go to the hospital.  Hospice asks that you call them first.  They may be able to manage your crisis at home.  If not, they can arrange transportation to the hospital.  There are times that the hospice may ask you to go to the hospital for a short stay if there is a problem that can be managed better there.

My loved one lives in a nursing home.  What can hospice do that they can’t?    

Nursing homes are experts in long-term care.  Hospice nurses are experts in symptom management and end-of-life care.  Hospice nurses are best equipped to deal quickly with health problems that arise.  Other benefits of hospice include more frequent personal care, volunteer visitors, paid medications and supplies, and bereavement follow-up for family members.

When should we think about getting hospice help?     

You can let your doctor know that you would like hospice care if it becomes appropriate.  You are entitled to at least six months of care, but some doctors hesitate to talk about hospice for fear you will think they are “giving up.”  Hospice is not giving up.  Just like you, we hope you do well.  Hospice is a way to be sure of the best care, no matter how things turn out. 

Is hospice linked to a religion?     

No.  Hospice care is only related to health insurance.  Because of the special nature of hospice care, we do make spiritual care counselors available to patients and families.  They can also help to link you to someone in your own faith community.

Who decides whether we get hospice?     

You do.  Your doctor authorizes care, but you decide if you want this care or not.  Sometimes the doctor calls hospice and asks us to contact you about hospice.  Some families call hospice and have us contact the doctor to ask for authorization.  Pathways will send someone, free of charge, to make an information visit if you need this.

Who makes our health care decisions when we are on hospice?      

You and your doctor are always in control of your care.  Hospice will make suggestions about your care, but you will always be in control.

What happens if my loved one is still alive at the end of six months?      

Hospice must periodically recertify that the patient has a prognosis of six months or less.  If at each of these dates it appears that the patient has six months or less to live, then the patient can stay on hospice.  If the course of the disease is slow, some people may be on longer than six months. 

Can we stop hospice care?

Yes.  Any patient can go off hospice at any time.  You can also come back on hospice if circumstances change.

What if the patient’s health improves? 

Sometimes with the extra care from hospice a patient’s health improves.  They may start eating more and be more active.  If they improve to the point that it looks like they will live more than six months, we will discontinue hospice care.  The patient can return to hospice in the future when needed.

What does hospice do for us after my loved one dies?  

A large part of hospice care is bereavement support for families and friends.  Pathways provides phone calls, newsletters, counseling, support groups, and remembrance events for families after a death.


Download a complete set of the questions and answers that we covered in this blog series by clicking here.

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.

Music Can Mean Less Pain

Focusing on music can distract people who have significant anxiety about pain enough that they feel the pain less acutely, according to a recent study done at the University of Utah Pain Research Center.  The study found that pain was reduced as the demands of focusing on the task rose.

Researchers had 153 volunteers concentrate on following a melody so they could identify the tones that stood out.  During the session small pain shocks were administered through fingertip electrodes.  The authors explained that the effects of the music resulted from competition with the participants’ pain pathways.

Interestingly, those who had registered the most anxiety about pain became more absorbed in the task and were more likely to experience reduced perception of pain.  The study authors suggested that, “Clinicians should consider patients’ personality characteristics when recommending behavioral interventions like music listening for pain relief.”

Pathways has volunteers that can provide music sessions to our hospice patients as part of our Integrative Therapies program of care for body and soul.

The results were published in the December, 2011 issue of the Journal of Pain.

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.

CT Scans in Lung Cancer Screening

New recommendations from the National Comprehensive Cancer Network (NCCN) say that patients determined to be at high risk for lung cancer should have regular screening with low-dose CT scans.

The NCCN guidelines define high-risk patients as:

• Age 55-74 plus ≥30 pack-year smoking history plus smoking cessation <15 years or
• Age ≥50 and ≥20 pack-year history of smoking and other risk factors besides second-hand smoke

A negative scan should be followed by annual low-dose CT scans for three years and then periodically until age 74.  If the baseline image reveals one lung nodule, the patient should have close follow up with additional low-dose CT scans, with the scan interval determined by the nodule’s characteristics.

According to the guidelines, a solid or partly solid nodule ≤4 mm requires annual screening with low-dose CT for three years and until age 74. Larger nodules have shorter screening intervals, ranging to follow-up CT in one month for patients with solid endobronchial nodules. Patients who have nodules with a ground-glass appearance require follow-up CT at intervals ranging from three to six months to 12 months, depending on nodule size.

Patients with a low or moderate risk for lung cancer do not need routine lung cancer screening.  The NCCN defines moderate-risk patients as age ≥50, a smoking history of ≥20 pack-years, and no additional risk factors. A low-risk patients is younger than 50 and has less than a 20 pack-year smoking history.

“Lung cancer screening with CT should be part of a program of care and should not be performed in isolation as a free-standing test,” according to the guidelines available on the NCCN website.

“Given the high percentage of false-positive results and the downstream management that ensues for many patients, the risks and benefits of lung cancer screening should be discussed with the individual before doing a screening low-dose CT.

“It is recommended that institutions performing lung cancer screening use a multidisciplinary approach that may include specialties such as radiology, pulmonary medicine, internal medicine, thoracic oncology, and thoracic surgery. Management of downstream testing and follow up of small nodules are imperative and may require establishment of administrative processes to ensure the adequacy of follow up.”

The NCCN offers additional guidance for solid and ground-glass nodules, based on specific nodule characteristics.

NCCN is a consortium of major US cancer centers.   

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.

Combating Fatigue in Cancer

Pilot Study

A team of researchers from Australia and New Zealand conducted a small pilot study to help determine an appropriate dose of methylphenidate hydrochloride, a central nervous system stimulant, to treat fatigue in patients with advanced cancer.

They reported in Journal of Palliative Medicine that 5 mg twice daily would be an appropriate dose to test in a definitive study. Ten patients provided consent.

After a three-day assessment, patients received titrated methylphenidate hydrochloride at doses ranging from 5 mg a day to 15mg twice a day. Nine patients completed eight days and five received the maximum dose at day 15. Three patients were satisfied with the results at a lower dose and were not willing to increase it.

The team noted a pattern of rapidly improving fatigue and depression at 5 mg twice daily.

Journal of Palliative Medicine, Volume 13, Number 10, Oct. 2010

Spiritual Pain in Advanced Cancer: Symptom for Hospice Chaplains to Address

Quality of Life Can Improve

A vast majority of advanced cancer patients receiving palliative care consider themselves spiritual and religious.  But spiritual pain is still common and is linked to lower quality of life.  This is another place in which the holistic hospice approach to mind and body may improve life’s final stage.

A study done by the Division of Geriatrics and Palliative Medicine, The University of Texas Medical School at Houston, Texas, examined the frequency and intensity of spirituality, religiosity, and spiritual pain, and how spiritual pain was associated with symptom expression, coping, and spiritual quality of life.

Researchers interviewed 100 patients with advanced cancer and had them complete questionnaires assessing their symptoms and ability to cope. 

Spiritual pain was reported in 44%, and was associated with lower spiritual quality of life. Patients with spiritual pain reported that it contributed adversely to their physical/emotional symptoms. There was a trend toward increased depression, anxiety, anorexia, and drowsiness among patients with spiritual pain, although this may not have been significant after corrections.

Every Pathways Hospice patient can have visits from extremely well qualified spiritual care counselors to give unbiased spiritual or religious support to patient or family members, to identify and resolve spiritual concerns, to explore the meaning of life, to administer sacraments, or to be a warm listening presence when needed.

This study can be found at J Pain Symptom Manage.  2011; 41(6):986-94 (ISSN: 1873-6513).

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.

Managing Pain Without Medication

In addition to medication for pain, there are other things we can do to reduce pain.  Usually these are used in addition to medicine or while waiting for the medicine to work.  But if a resident refuses pain medication, using these techniques may help.

Alternatives to Try

Distraction:  This is an effective technique.  It’s as though the brain can only pay attention to one thing at a time.  Talking, watching TV, playing games or looking at photo albums are some examples.  If the pain is severe, these will not work.

Deep breathing / relaxation exercises:  Guide the person in deep, slow, rhythmic breathing.  There are many relaxation recordings available that are easy to follow.  You can suggest to family members that they purchase relaxation recordings and furnish a listening device.

Cold:  A cold pack (gel pack, ice pack, or zip bag with crushed ice) helps inflammation or muscle ache.  Wrap the pack in a towel; do not put the ice pack directly on the skin.  Even if this does not relieve all pain, it may help to numb the area somewhat.

Warmth:  A warm tub bath or warm packs can relax muscles that have tightened due to pain.  A warm, wet washcloth applied directly to the affected area may help.  Covering the cloth with plastic will help retain the heat longer.

Massage: This is an excellent way to distract from pain and relax tense muscles that make the pain worse.  Lotion may reduce friction.  You do not have to massage the painful area.  Massaging another area of the body may distract the mind from pain.

Prayer / meditation: Some people find this very comforting and perceive less pain during prayer.  There may also be rites or rituals that could comfort the resident.  Ask family members about this.

Music: Music is another form of distraction that research has shown relieves pain.  It does not matter what kind of music, whatever the resident likes will work.  Again, family members can help provide information about musical tastes and recordings and a CD player.

Energy work / therapeutic touch: These are hands-on techniques in which the practitioner places his or her hands on the resident’s clothed body to achieve a transfer of energy.

Acupressure / acupuncture: These techniques apply pressure or needles to specific points on the body to relieve discomfort in other areas that are associated with those points.

Reflection / life review: Those nearing the end of life often want to reflect on the events of their lives and the people they knew.  Asking about family members or the resident’s youth or birth place may assist in starting this kind of life review.

Pets: Research shows that pets improve mood, lower blood pressure and heart rate, and may serve as a good distraction from pain.

Innovative Program at Pathways

Pathways Hospice patients can take advantage of our well developed Integrative Therapies program.  It provides innovative therapies such as guided imagery, comfort touch, music therapy, aromatherapy, massage, and pet therapy.  These therapies are shown to reduce agitation in residents.

If you are interested in learning more about the Integrative Therapies program at Pathways, talk to Pathways staff, or visit our website:  www.pathwayshealth.org.  The Resources section includes downloadable information and simple tips for incorporating Integrative Therapies in your daily life too!

Men, Women, and Pain

Rigorous research has concluded that men have a higher threshold for pain.  In a large-scale prospective study of 700 patients conducted by physicians from Tufts-New England Medical Center and San Ignacio Hospital, Bogata, Colombia, researchers examined post-surgical morphine use.  After adjusting for type of surgery and age, women had higher levels of pain intensity throughout the study than men, requiring an average of 30% more morphine on a per-weight basis than men to attain a similar decrease in pain intensity. 

Research results have been mixed, some finding that men required more morphine after surgery than women.  A very large Chinese study found women used significantly less morphine when using patient-controlled analgesia post-operatively, indicating that cultural, ethnic or genetic factors may account for differing research results.  But in animal models, male rats exhibited greater analgesia than female rats to equal doses of opioids.

The researchers wrote that, “Sex differences in pain perception have been attributed to a different socialization process for men and women that influences bodily experience and the willingness to communicate distress. Hormone variations could also in part explain sex differences in pain experience and response to morphine.”

Hindus & Hospice

Many Hindu beliefs align with hospice and palliative care goals.  A senior research specialist at the City of Hope in Duarte explored the Hindu concepts of suffering, karma and reincarnation in a recent article in the Journal of Hospice and Palliative Nursing.

Susan Thrane, MSN, RN, OCN, explained that among other similarities, Hindus often believe that death should neither be sought or prolonged, values that reflect the hospice philosophy.  However, they do sometimes believe that physical suffering is beneficial in that it can lead to spiritual growth, perhaps resulting in a better birth in a future life.

Although palliative and hospice care usually seeks to relieve pain and suffering, it also seeks to help individuals meet their personal goals, and sensitive to cultural beliefs.

Thrane found that Hindus tend to be family oriented, and may often defer health care decisions to the oldest son. 

There are an estimated 2.3 million Hindus in the US.

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.

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.