Misconceptions and Facts About Hospice
Most hospice related websites include a page which lists the misconceptions people may have about hospice care. This page also includes a summary of related facts about hospice to explain and correct each misconception.
To ease your search for this information, we’ve listed the many misconceptions our callers have asked about over the years and the facts we have discussed with them. We’ve also listed several other misconceptions about hospice care and their related facts.
You’ll find some of our responses long because we want to ensure you understand the flexibility you have with hospice care and the control you have over your hospice care.
Before we begin, we would like to offer an observation. Many of the misconceptions you will see here seem to suggest a basic distrust of hospice…..we assume because it is a health care program developed and initiated by the federal government and provided primarily through Medicare and Medicaid.
We want you to know that almost all hospices (96% and including us) have no direct relationship with any government agency. Our only connection is that we are required to operate under a set of federal and state regulations put in place for your protection. It’s important to remember we are part of your community and here for your benefit, not the benefit of the federal or state governments.
Hospice care is one program our federal and state governments have gotten right. Hospice care has been established for your benefit to help you, not to control how you live your life. Hospice imposes no restrictions on clients, their lives or their decisions about their lives. In fact, hospice guarantees your right to control your life and care during the end stage.
Let’s look at the basic regulations and laws hospice agencies must follow.
The Medicare Hospice Benefit is included under Part A coverage. Its governing regulation has a rather imposing name:
|Code of Federal Regulations
||Centers for Medicare & Medicaid Services, Department of Health and Human Services
We refer to it simply as the Medicare Conditions of Participation and you will find it here, if you would like to know more about the way Medicare directs and requires us to provide care.
Not to be outdone by the federal government, Texas has a companion regulation which has an equally imposing title (take a deep breath):
|Texas Administrative Code
||Social Services and Assistance
||Department of Aging and Disability Services
||Licensing Standards for Home and Community Support Services Agencies
|| Additional Standards Specific to License Category and Specific to Special Services
||Standards Specific to Agencies Licensed to Provide Hospice Services
If you would like to read this one, you can go here for the general requirements we must meet as a Texas home and community support services agency. However, for a better understanding of our role as a Texas hospice agency, go here to read the specific Texas requirements for hospice agencies.
There are a number of other federal and State regulations we must follow as a member of the medical community, but these two form the foundation for what we do. If you prefer not to read them, please take comfort in the fact that we are highly and carefully regulated by both federal and state governments to ensure we provide only the highest quality hospice care services to our clients.
With that, let’s look at some of the misconceptions and facts about hospice and hospice care.
Misconception: A hospice client has to live in a hospice facility to receive hospice care.
Fact: Hospice is not a place. It is a concept of care. Hospice care usually takes place in the comfort and security of our client’s home, but we will provide it wherever he/she lives, including a family member’s or friend’s home, long term care facilities (nursing homes), independent or assisted living facilities and residential care homes (group homes). Hospice care allows families to be together when they need it the most, ensuring the client’s remaining days of life are spent in peace, comfort and dignity while surrounded by loved ones.
Misconception: A client must be bedbound to qualify for the hospice benefit
Fact: Hospice care becomes appropriate when a person has a life prognosis of less than six months, regardless of the person’s current physical condition. Hospice encourages clients to be physically active for as long as possible. Hospice clients do not have to be bedbound or even home bound to be appropriate for hospice care.
Misconception: Hospice is only for people with cancer.
Fact: Hospice is appropriate and available for all end stage diagnoses or conditions. In addition to cancer, other diagnoses include, but are not restricted to, the end stage of illnesses such as congestive heart failure, coronary artery disease, Parkinson's, COPD, Alzheimer’s/Adult Dementia, ALS, AIDS, kidney failure, failure to thrive and even debility unspecified (meaning there is no specific illness or condition which is the primary cause of the terminal diagnosis).
Misconception: When you receive hospice care, you can no longer receive care from your primary physician.
Fact: You may continue to visit your primary physician whenever you desire. We encourage these visits and welcome the familiarity, comfort, knowledge and support the primary physician can provide. We promote interaction with the primary physician at all times and submit all plans of care to the primary physician for review and consultation. The primary physician may continue to bill Medicare under the Part B benefit for medical services provided.
Although your primary physician will not normally provide care directly related to the hospice diagnosis, if he or she should do so, then he or she would bill us and we would bill Medicare for reimbursement for the services. If private insurance is used, your physician should consult with the insurer to understand and limitations on filing claims.
Approximately 75% of our clients use our Medical Director as their primary physician because she is highly experienced in the intricacies and subtleties of hospice and palliative care.
Misconception: Clients and/or families have to pay for hospice care.
Fact: Hospice care is a benefit provided at no cost to eligible Medicare beneficiaries and those who qualify for Medicaid. Medicare does allow hospice agencies to charge a
co-payment of five percent on prescription medications and a type of care called respite care. Most of us never ask for these co-pays, but it’s a good idea to ask the question, “Do you charge the co-pays?”
Most private insurers also cover hospice care as well, although you should check with your insurance provider to understand your coverage limits, including any required deductibles and/or co-payments.
Misconception: Hospice care is expensive.
Fact: Most people who use hospice are over 65 and entitled to the Medicare Hospice Benefit or have access to hospice care through Medicaid. Hospice care from either of these sources covers all hospice services and, if the co-pays are not charged (we don’t), there are no out-of-pocket costs. This means you are not faced with additional financial burdens. This is in sharp contrast to the huge medical expenses which may be incurred at the end of life when hospice is not used.
Most private insurers also pay for hospice care. If you have private insurance, you should check with your insurance provider to ensure you understand your coverage limits, including any required deductibles and/or co-payments.
Misconception: Hospice is only for people who can accept death.
Fact: Many people (clients, families and caregivers) affected by terminal illnesses struggle to come to terms with death. One of the primary purposes of hospice is to gently help them find their way at their own speed. One of the priorities of hospice care is the counseling we do to help the client, family and caregiver in this regard. Hospices welcome inquiries from potential clients and/or families who are unsure about their needs and preferences. Hospice staff members are readily available to discuss all options and provide counseling to facilitate client and family decisions about end of life issues.
Misconception: My personal physician decides if I should receive hospice care and which
hospice agency I will use.
Fact: By Medicare and Medicaid regulations, it is your absolute right to choose the hospice agency you wish to use. Your personal physician's role in hospice is to determine whether you are medically qualified for hospice and to certify that you are. Your physician may recommend a specific hospice agency, typically because he/she normally refers to one or more specific hospices. However, no one can force you to use a hospice other than the one you wish to use.
Misconception: Hospice is a gloomy and sad experience.
Fact: For most of our clients, their families and caregivers, the hospice experience is generally a relaxed, friendly relationship because the hospice team quite literally becomes part of the family. The bond of trust and affection becomes that close.
We promote an atmosphere which is warm and caring and we encourage you to treat us as you do your own family. You won’t see any white lab coats or clipboards. We’ll be dressed in business casual clothes…..except maybe at Halloween, Mardi Gras, Cinco de Mayo and other times when we may be in the mood to dress up and bring food and beverages to celebrate the occasion with our clients and their families. We also enjoy celebrating birthdays, anniversaries and other special events and times in the lives of our clients.
Misconception: All hospice providers are the same.
Fact: There are a number of facts to consider here.
You'll want to check but almost every hospice agency you talk to will be certified by Medicare and/or Medicaid. In addition, all Texas hospice agencies must be licensed by the State. The State’s licensing requirements follow the Medicare hospice standards (“Conditions of Participation”) very closely.
For this reason, all Medicare/Medicaid and State licensed hospice providers must, by federal and State regulations, provide exactly the same services and types of care.
However, the manner in which the care and services are provided can vary widely. You no doubt have experienced situations in your life where you have received the same services from two different vendors and found that the quality of the services differed greatly……. generally speaking because one of the vendors cared more and took more pride in the quality of the services provided.
If you read our page, How to Choose a Hospice, you will find many of the questions to ask and the warning signs to look for when you are choosing a hospice agency.
Misconception: Once you are admitted, you can never stop hospice care.
Fact: You may revoke your hospice care at any time for any reason or no reason. For example, if a new and innovative treatment for your particular illness is discovered, you may revoke hospice care to pursue this treatment. Or perhaps you are moving out of the area or simply decide hospice care is not for you….or your pain, symptoms and overall condition improve enough that you can be discharged from hospice care.
You may then return to Medicare/Medicaid hospice care at any time as long as you meet the medical criteria for admission. You never lose your Medicare/ Medicaid hospice benefit simply because you revoked hospice care at some time in the past or even several times in the past.
Private insurance coverage varies so you should check with your insurance provider to understand your coverage limits.
Misconception: If a person decides to stop hospice care, he or she loses all Medicare, Medicaid or private insurance hospice care benefits.
Fact: As mentioned above, you may revoke hospice care at any time. You can then re-enroll in hospice care as needed, as long as you meet the Medicare/Medicaid medical criteria for admission. You still have full access to your Medicare/Medicaid hospice benefits, regardless of the length of time you have been on hospice or away from hospice or even the number of times you may have revoked hospice care.
If you have private insurance, you should check with your insurance provider to determine if your coverage is affected by a previous revocation.
Misconception: A person can only receive hospice care for a limited amount of time.
Fact: Both Medicare and Medicaid ensure hospice care is available as long as you continue to meet the hospice medical guidelines. There are no time limitations on Medicare or Medicare hospice care.
If you have private insurance, you should check with your insurance provider to understand your coverage limits.
Misconception: Hospice only provides care for six months, so enrollment should be delayed as long as possible.
People should wait until the last days of life before they choose hospice care.
It is too early for hospice if the client feels good or doesn’t have pain.
Hospice is useful only when someone needs heavy-duty medications, like morphine.
Fact: There is no limit to how long you can receive Medicare/Medicaid hospice care as long as you continue to meet the eligibility criteria. Some of our clients have received hospice care well beyond the six months guideline.
The earlier that you receive hospice care, the more effective it can be. While hospice can certainly provide crucial support to you and your family during the final stage of life, early intervention allows us to provide better control of pain and symptoms, plus more comprehensive emotional and counseling support to you, your family and caregivers. Too often clients and families suffer needlessly with pain, emotional distress and other worrisome issues because they think they are not ready for hospice.
Misconception: Hospice means death will soon occur.
Hospice is only for people who are close to death or actively dying.
Fact: Receiving hospice care does not necessarily mean death is imminent. The six month guideline is just that.....a guideline. The earlier you receive hospice care, the more opportunity we have to stabilize your medical condition, control your pain and symptoms, and assist with your other needs and the needs of your loved ones. Hospice does nothing to hasten death or to prolong life. Your illness or condition follows its natural course. Our purpose is to improve the quality of life that remains.
Most of our clients actually gain an increased desire to live because their quality of life on hospice usually improves. Clinical studies have shown that clients who receive hospice care typically live longer than those with similar illnesses or conditions who don’t receive hospice care.
Misconception: Choosing hospice means giving up hope.
Fact: Choosing to accept hospice care in no way means you are giving up hope, although it may mean redefining hope. Where you once hoped for a cure, you may now hope to be as pain and symptom free as possible. Hope may now mean seeing a distant friend or relative again or taking trips to the beach or other favorite places. Hope may be as simple as wanting to spend as much time with loved ones as possible or remaining at home rather than having to go to the hospital or a nursing home. Hope may look different in hospice care but it is certainly not lost.
It’s important to understand and remember that quality end-of-life care isn’t about how you die; it’s about how you live. In hospice we focus on providing comfort and guidance to those with life limiting illnesses and their loved ones, so they all can live each remaining day to the fullest and with the highest possible quality of life.
When cure is no longer possible, hospice provides the type of care most people say they want at the end of life….care that gives comfort and enhances quality of life. The most common comment we hear from families who chose hospice for their loved one is, “we wish we had known about hospice sooner.”
Misconception: Only the elderly can be admitted to hospice care.
Fact: There are no age limitations on hospice care. ANYONE who has been diagnosed with a life-limiting illness can be admitted.
Misconception: Hospice takes the client off of all prescription medications, even the ones not related to the hospice diagnosis.
Fact: This is not true. We will begin your care by reviewing all prescription medications you are taking. We will not suggest you stop taking medications already prescribed unless we:
(1) are aware of a more effective medication or one having fewer side effects;
(2) believe your current medication is not helping you; and/or
(3) have concerns about potentially harmful side effects from combining your current medications with those we prescribe for pain relief and symptom control.
If we suggest changes, we will explain the reasons for our suggestions and describe any potential side effects. If you agree, we will make our suggested changes. If you don’t agree, then we won’t. It’s your decision and it’s that simple.
Misconceptions: When I am no longer capable of making my own decisions, hospice will do whatever it wishes.
Hospice care won’t allow me or my family to be involved in making decisions about treatment.
Fact: Prior to reaching the point where you no longer can make your own decisions, and probably at the urging of the hospice team, you will have already selected and appointed in writing someone you trust to act as your medical representative and/or durable power of attorney. This person, knowing you and your wishes, will make care decisions on your behalf. We are required by Medicare, Medicaid and the State to act on those decisions as if they were spoken by you.
Hospice also counsels the client and family to work together to make decisions that are in the client’s best interest. We work closely with both as we provide suggestions and recommendations for medications and care. Everything we do is done on the client’s behalf and with the client’s or client representative’s consent. We do not make decisions on the client’s behalf that rightfully should be made by the client or the client’s representative.
Misconception: Hospice only provides help and support to the client. The family and caregivers receive no help at all.
Fact: Hospice focuses on comfort, dignity, emotional support and quality of life for the client. However, hospice views the client, family and other caregivers as a single unit and provides education, training, emotional support and counseling services to everyone. Hospice also provides bereavement support to the family and caregivers after the client’s death.
As mentioned before, the most common comment we hear from families who chose hospice for their loved one is, “we wish we had known about hospice sooner.”
Misconception: Hospice requires that I sign a Do Not Resuscitate (DNR) order.
Fact: You do not have to sign a DNR to receive hospice care. Signing a DNR means that you do not want to be resuscitated with CPR or other means if your breathing or heart stops. While most hospice clients elect to have a DNR in place, it may not be the right choice for everyone. The goal of hospice is to promote client comfort according to the client’s care choices. Hospice never forces clients to do anything they do not wish to do. We work WITH you and FOR you.
Misconception: Hospice will add unnecessary services to use up my hospice benefit.
Fact: Hospice works differently than the medical community you may have been involved with in the past. Hospice agencies do not bill for each service the way physicians and hospitals do. Hospices are paid a fixed daily rate as compensation for all of the services we provide.
For that reason, you should request and use as many of the services hospices provide as possible. Also, under Medicare and Medicaid, your hospice benefit cannot be “used up”. Your hospice benefit is available to you as long as you remain medically qualified for hospice care.
If you are covered by private insurance, you should check with your insurance provider to ensure you understand your coverage limits.
Misconception: You say that I can never use up my Medicare hospice benefit, but I’ve heard there is a cap on the amount Medicare pays to hospices for providing hospice care. Is there a cap and, if there is, how am I affected by it?
Fact: There are two simple answers to this.
1. Yes, there is a reimbursement cap imposed by Medicare which sets a maximum amount
that a hospice may be reimbursed for providing care to a Medicare beneficiary.
2. You are not affected by the cap at all.
To be a Medicare hospice provider, Medicare requires all Medicare hospice providers to continue providing the same type, level and amount of care and services even if you have been on hospice so long your hospice has received the maximum reimbursement amount. As a Medicare Part A beneficiary, if you are on hospice longer than six months, you and your family should monitor your care very closely to ensure the amount or level of care does not change. If it does, you should contact your hospice Administrator immediately to ensure you are receiving the care you are entitled to.
Misconception: Clients and families must put up with constant intrusion of hospice staff into their home.
Fact: The hospice team works with clients, families and caregivers to provide the care and services they wish to have at times convenient to them.
Misconception: Enduring pain and suffering builds character.
Fact: This is, of course, nonsense. NO ONE should ever have to live with pain, particularly in today’s world where a wide variety of pain medications are available. There are many adverse side effects people can experience when they are in constant pain.
• increased stress on the cardiovascular system through increased blood pressure and
heart rate, and increased risk for thrombosis and pulmonary emboli
• delayed rehabilitation, immobility and possible resulting skin breakdowns
• disruption of normal sleep patterns
• lack of interest in dietary intake and potential dehydration.
• reluctance to take deep breaths and cough postoperatively which can lead to difficulty in breathing,
chest pain, coughing and pneumonia
• increased release of stress hormones, negatively affecting normal urinary and renal function
• increased potential for confusion, delirium and increased risk of falls
• delayed gastric emptying and constipation
Hospices work carefully to ensure pain is held to levels that are acceptable to the client.
Misconception: Some kinds of pain cannot be relieved.
Fact: We have not found this to be true. According to our clients, we have had a very high rate of success in keeping pain at levels acceptable to them regardless of the source or type of pain. We continually re-assess our clients’ levels of pain and review their histories so we can prescribe medications or combinations of medications that will allow them to keep pain at an acceptable level.
Misconception: People should not take morphine before their pain is severe because it begins to lose its effect.
Fact: Using morphine when it is needed early in the course of a terminal illness does not mean that it won’t continue to work later as the disease progresses. However, if pain continues to increase, we can increase the dose to regain pain control.
We do place a limitation on our use of morphine and similar medications. We will not keep a client sedated, simply because there is no quality of life in that condition. Fortunately, we have had great success controlling pain to our clients’ satisfaction without creating a significant sedation side effect.
Misconception: People on morphine die sooner because their breathing is weakened.
Fact: Clients usually adjust quickly to any effect that morphine may have on their breathing. We prescribe a small initial dose, gradually increasing it if needed. Breathing problems from morphine occur so rarely they are usually not even listed as side effects. In fact morphine is the drug of choice for breathing distress in people with end-stage heart or lung disease because it usually helps them breathe more normally and comfortably.
Misconception: People on morphine or similar medications are too sleepy to function.
Fact: When clients start to take drugs like morphine, they often feel drowsy for a short period of time, typically a matter of days. However, their bodies build up a resistance to the sedating effects. Most clients whose pain is well controlled on morphine are not bothered by unusual sleepiness. Some people, however, notice a difference in their alertness and may choose to accept less than complete pain control as a trade off.
Misconception: People who take morphine or similar medications will become addicted.
Fact: Drug addicts are driven by their need for narcotics. Hospice clients usually do not have a drug seeking behavior. When their pain is in good control, they don’t desire more narcotics. Sometimes dosages can even be decreased. The overwhelming majority of hospice clients on morphine or similar medications are not addicts, will not become addicts and should not be thought of as addicts or even potential addicts.
As long as we’re on this subject, though, let’s address the concern expressed in this misconception. Some of the medications we use could, over time, become habit-forming to some clients and the resulting physical dependence could lead to withdrawal side effects if such medications were stopped quickly. However, the fact is we normally are never able to stop using the medications once we have started them because the client continues to need them to control pain during the final stage of life, so withdrawal side effects are rarely a problem.
Our three most experienced RNs have a combined 85 years of direct hospice care experience. In our agency’s history and in their memories, we are not aware of a single instance where addiction became a factor in caring for hospice clients, except for a few who had previous histories of drug addiction.
Misconception: Morphine must be given by injection.
Fact: Hospice has been a leader in demonstrating the effectiveness of morphine and similar medications when taken orally. Even people who received morphine injections for pain in the hospital typically find their pain very well controlled on oral medications at home. There are also long-acting medication preparations which can be given every 12 hours or skin patches which can be applied every 72 hours to simplify the process of pain control.
Misconceptions: Hospice doesn’t offer any medical treatment.
Fact: Hospice does provide medical treatment, primarily in the form of palliative care. Our clinical staff members are specially trained and highly experienced in pain management medications and techniques. However, we also provide other medical care ranging from healing bedsores on the few occasions they occur to treating and controlling infections.
Misconceptions: Hospice provides less care than physicians and hospitals do.
People have to be in a hospital to receive effective pain management.
Fact: Compared with the average acute care hospital, the home setting is a much more efficient and safer environment to provide effective pain management. There is no competition for the attention of nurses or a caregiver. Having a limited amount of caregivers ensures a much higher likelihood of detecting subtle nuances or more substantial changes in the client that may reflect problems with medication dosing, effectiveness or side effects. Also, closer coordination between the hospice clinical team and hospice medical director typically results in more timely changes in care plans, medication plans and the use of more appropriate interventions.
Hospice clients typically find their care and support systems actually increase. Each hospice client is cared for under the direction of our medical director who is a Doctor of Internal Medicine. Our care is provided by a registered nurse case manager, medical social worker, chaplain, certified nursing assistant, pharmacist and volunteers. Many of our clients and their families have commented they have received more care and attention with hospice than they were before.
With at least two visits each week by our RN case manager, plus regular visits from our medical social worker, chaplain and certified nurse assistant, you receive more face to face help and support than you would through occasional visits to your physician, the hospital or home health providers.
We provide all prescription medications related to the hospice diagnosis and required for your comfort, including medications for pain control, symptom control, anxiety nausea, vomiting and other conditions.
Because our primary focus and goal is effective pain management and control, we have extensive experience and expertise in all aspects of pain control……in most cases, far more than the typical clinician in the hospital setting.
We also do everything possible to ensure that client needs are satisfied, including those related to physical, clinical, psychosocial and spiritual issues.
Regardless of the time of day or day of the week, support is never more than a phone call away, 24 hours a day, 7 days a week. Included in this support, if you wish, is your primary physician who remains an important part of the hospice team and ensures continuity of care.
Misconception: Hospice is for people who don't need a high level of care.
Fact: Hospice is serious medicine. Hospices are state licensed and most are Medicare certified, requiring that they employ experienced medical and nursing personnel who have specific expertise, skills and experience in symptom and pain control.
Hospice provides not only medical care, but also emotional and spiritual support to the client, family and caregivers. All of this support is provided by an interdisciplinary team that includes a hospice physician, registered nurse, medical social worker, chaplain, certified nursing assistant and volunteers.
Misconception: Hospice care just keeps dying people heavily medicated.
All hospice focuses on is the physical process of dying.
Fact: Our pain management protocols are highly specialized and tailored to each client to ensure the highest quality of life is possible each day until the end. We only prescribe the amount of medications necessary to provide pain control at a level satisfactory to our clients. We do not keep our clients sedated simply because the client would have no quality of life in that condition. At the same time we provide emotional and spiritual support to the client, family and caregiver, including bereavement support for the family and caregiver after the death.
Repeating one of our earlier comments, it’s important to understand and remember that quality end-of-life care isn’t about how you die; rather, it’s about how you live. We focus on providing comfort and guidance to those with life limiting illnesses and their loved ones so they all can live each remaining day to the fullest.
When cure is no longer possible, hospice provides the type of care most people say they want at the end of life….comfort and quality of life. The most common comment we hear from families who chose hospice for their loved one is, “We wish we had known about hospice sooner.”
Misconception: Hospices only administer massive doses of morphine to hasten death.
Fact: This is definitely false. Hospices do NOTHING to hasten death or to extend life. Clients do not receive morphine or similar medications until needed to control pain or shortness of breath.
Because morphine is commonly used as a part of end-of-life care, some people interpret the use of morphine as a signal that the end is near. The use of morphine does NOT initiate the final phase of life or lead directly to death.
It is the degree of pain that dictates which pain medication is used, not the stage of a terminal illness. We start with the mildest medication and if it works, stop there. If not, we move on to stronger medications, such as morphine. Some people never need stronger pain relief while others may require morphine or similar pain medications during their entire stay on hospice care. The use of such pain medications will neither determine nor affect how long you live.
For clients who have chronic pain, morphine can provide the type of comfort that permits
improvement in activities, such as:
- easier deep breathing
- better ambulation
- more tolerance for sitting upright
- more nutritional intake
- improved social interaction
All of these activities can help delay medical complications and assist in lengthening
and improving quality of life.
We manage symptoms and pain very carefully. As clients who have issues with pain and/or shortness of breath approach death, some may develop an increased tolerance to morphine. This may make it necessary to increase the dosage for effective relief.
At this point in the client’s life, morphine dosages have almost no limit. If necessary, we will prescribe as much as can be given safely to relieve pain or symptoms to an acceptable level.
Quite often, the dosages we prescribe are significantly higher than what your primary physician may routinely prescribe. Because we provide pain control for a wide variety of pain and symptom issues on a daily basis, we have more experience with pain reducing medications and the tolerance levels our clients have to the medications we use. For this reason we are more comfortable using higher dosages to ensure pain is maintained at an acceptable level.
The only thing we will not do is use such a high dose of morphine or similar medication that the client is completely sedated a majority of the time, because there is no quality of life in that condition.
Misconception: Dying is always painful.
Fact: This is one of the most common misconceptions about dying. In almost every case, pain can be relieved safely and to a level acceptable to the client throughout the end stage of life.
The hospice clinical staff and most doctors are familiar with the proper use of pain control medications. When given in the correct dose at the right time, such medications can provide excellent pain relief without sedating the client. When pain is relieved, clients can experience a better quality of life until the time that death occurs. Good pain management does not shorten the course of life. On the contrary, clients who receive excellent pain management tend to live longer than expected because they feel better physically and emotionally.
Misconception: A dying person who has become dehydrated due to lack of fluids experiences extreme thirst, pain and distress.
Fact: Dehydration in a seriously ill person with a terminal condition, and in the frail elderly, is not painful. In fact, frail elderly persons have a blunted sense of thirst which allows them to slip rather easily into a dehydrated state unless we, the family and the caregiver monitor fluid intake very carefully. Dehydration is generally characterized by increased sleepiness and less mental alertness without other signs of distress.
Studies have shown that the majority people who are actively dying never experience thirst and, if they do, only initially. The thirst that occurs is easily alleviated by small amounts of fluids or ice chips given by mouth and by lubricating the lips.
Misconception: A person with an advanced disease or a terminal illness who stops eating will “starve to death” painfully.
Fact: When a person with advanced disease or a terminal illness stops eating, it is usually because the disease has progressed to the point where the body is no longer able to process food and fluids the way a healthy person does. Forcing an individual to eat or starting artificial nutrition and hydration does not help him or her live longer, feel better, feel stronger or be able to do more.
In fact, when people in the end stage of life are given more artificial nutrition and/or hydration than their bodies can handle, they can feel bloated and/or nauseated and will often develop diarrhea. Studies have shown that the majority of those who are dying never experience hunger. In those who do, small amounts of food and fluids, offered whenever the client wishes, relieves any hunger pangs.
Misconception: Hospice starves clients to death.
Fact: Hospice clients continue to receive food and fluids for as long as they are willing and able to have them. Hospices do not starve clients or withhold nutrition and/or fluids.
As people approach death, they often begin to refuse food and liquids….even clamping their mouths shut when offered something to eat or drink. When clients get to the end of life and are truly in the active phase of dying, neither food nor fluids should be forced on them. Doing so may cause them to choke or get fluid overload because their bodies can no longer process what is being given to them. It is not the family, caregivers or hospice who stops the feeding, it is the client.
Misconception: People die as they have lived.
Fact: While this is generally true, it is also possible for people to change. If people receive excellent, compassionate care during their last stage of life, they feel better and will have many opportunities to reminiscence, receive and/or give forgiveness of past difficulties with family members and others, and grow spiritually. This is made possible by open and direct communication among client, caregivers, family and the hospice team.
Autumn Journey Hospice
5347 Spring Valley Road
Dallas, TX 75254
Fax: (214) 447-9480