A Major Distressful Symptom in the Dying

A Major Distressful Symptom in the Dying
By Victor Montour

blog 8.13

Caregivers may be surprised when a terminally ill (and usually calm) patient becomes restless or even agitated. The restlessness or agitation varies from patient to patient. When caregivers see this change they may be completely bewildered and feel helpless: not knowing what to do. It is common knowledge in hospice when a terminal illness not only initially strikes, but is now nearing the end, patients may experience profound mood changes. Such mood changes are often difficult for caregivers. Causes and treatment for restlessness and agitation are well-known among the hospice professionals.

What is Terminal Restlessness or Agitation?

Those of us who work with the dying know this type of restlessness or agitation almost immediately. However, the public, non-hospice professionals and patient’s family may have no idea what is going on and often become quite alarmed at this change in condition. What does it look like? Although it varies in each patient, there are common themes that are seen over and over again. Patients may be too weak to walk or stand, but they insist on getting up from the bed to the chair, or from the chair back to the bed. Whatever position they are in, they complain they are not comfortable and demand to change positions, even if pain is well managed. They may yell or strike out using uncharacteristic language, sometimes angrily accusing others around them. They appear extremely agitated and may not be objective about their own condition. They may be hallucinating, having psychotic episodes and be totally “out of control.” At these times, the patient’s safety is seriously threatened. Your hospice professionals are experienced with managing these symptoms and will help the caregiver focus on the patient as a whole person and not the behaviors being exhibited.

Need to Eliminate Other Obvious Causes of Distress

Just as in all symptoms, other causes must first be ruled out or eliminated. Your hospice nurse will and must make sure that the physician’s orders are being followed, that if any other symptoms are not well managed, the physician is contacted or adjustments are made in order to relieve those symptoms. Physicians and nurses must continually re-assess the patient’s total overall condition, monitoring everybody system’s function. Checking pain levels is a first step. Is the patient breathing effectively? Is oxygen being given if appropriate for the patient’s disease condition? Carefully evaluating, recording and reporting all outward signs must be habitual with those caring for the dying. Any changes must be understood, evaluated and responded to if appropriate.

For example, patients experiencing intense pain may become agitated. The initial thought to use sedatives immediately might make sense if one is not thinking clearly: “… the patient is agitated; I’ll use a sedative…” However, that may be a very short-sighted and uneducated approach. Why? Because sedating the patient is not the first action to take. One must first determine what other causes might exist. When pain is severe, sedatives will not eliminate agitation! However, relieving the pain eliminates the agitation. On a more basic level, removing a hard object such as a syringe or catheter tubing that may have drifted underneath the patient may be all it takes to relieve the agitation. Common sense must first be applied!

Questions to be asked

The following are examples of questions that nurses and physicians should ask themselves as they approach this problem:

  • Is there anything physically interfering with the patient’s comfort?
  • Does the patient have pain that is not being well-managed? Observing outward facial expressions and body posture are important to evaluate.
  • If the patient has a urinary catheter, is it “patent” (meaning open) and is urine flowing freely through it? If it is plugged, that could cause extreme pain from pressure in the bladder.
  • Is the patient having regular bowel movements? When was the last bowel movement and what consistency did it have? Could the patient be constipated?
  • Is there some other sudden change in function that may be causing distress to the patient?
  • Is there an infection causing the agitation?
  • Is the infection an expected effect of the disease, such as brain cancer?
  • Is the patient going through obvious psychological and emotional distress? Has a counselor or minister’s services been offered to the patient and family? Is the restlessness purely psychological or is it metabolically based?
  • Has a new medication been added? Has a medication dosage been recently increased or decreased? Is this a side-effect from a medication?
  • Has the patient entered the pre-active phase of dying?

Metabolic Changes Causing Restlessness and Agitation

As the terminally ill near death, body organs and systems begin to fail to a greater and greater degree. Kidneys stop producing as much urine and function poorly, the liver and other organs also start to shut down. Waste products from the cells and tissues of the body begin to build up in the tissue spaces and blood stream. Biological and chemical balance is lost. The pH in the blood and other areas may change dramatically. In many patients, these changes alone may cause restlessness and agitation that may be quite severe.

Medications for Terminal Restlessness and Agitation

The physician may have written standing orders for certain medications to be given for these conditions. Such medications include anti-anxiety medications such as Lorazepam (Ativan) and Diazepam (Valium) and anti-psychotic medications such as Haloperidol (Haldol), Chlorpromazine HCl (Thorazine) and others.

The hospice nurse and physician will be extremely careful not to give a medication that might be contraindicated for the patient’s condition. It is not appropriate to give all patients Ativan and Morphine, for example, if they become agitated. It they are in pain, then pain medication is appropriate. If their pain is well-managed and they are still agitated, then the other medications may be applied. Certain disease conditions respond well to these medications while others have an opposite or no effect.

As mentioned earlier in this blog, hospice care varies according to the patient, the disease, the stage of the disease and the exact situation being encountered. Some believe that hospice care is less demanding than say, acute care in the hospital or intensive care. I can assure you that is not the case. Excellent hospice care requires the same degree of professionalism as in other specialties in health care. Constant patient assessment and re-assessment are necessary to achieve the goal of comfort.

If you would like more information about Terminal Agitation please call 303-957-3101 or 970-776-8080 or email us at info@frhospice.com

Watch out for our next blog: Death of a Friend

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Going the Extra Mile

Going the Extra Mile

By Pam Ware and Victor Montour

It’s simple… go the extra mile and you will stand out from the crowd.
A quote from Robin Crow.

Recently Front Range Hospice received a referral from one of our hospital partners that we currently have a General in Patient contract with. The patient is the matriarch of her family and had been in the hospital or an Acute Long Term Care Hospital for a little over a month. She had endured a lot in that month and so had her family. Multiple surgeries, multiple infections, the need for a ventilator, central lines and a number of other interventions. It was a constant roller coaster of emotions for her large and loving family.

When the decision was made for hospice, the patient was not conscious. Front Range Hospice received the referral at the end of the work day for most people, but Front Range Hospice is open 24/7. We are keenly aware that when a decision is made to move away from aggressive treatment and just focus on comfort, it is important for the family to see and be able to talk to a caring hospice representative.

Our hospice liaison arrived within an hour of receiving the referral and our admitting nurse was not far behind. Our liaison gathered all the family together and provided a detailed informational session about hospice and the services provided by hospice. During this meeting our liaison was able to establish the family had further clinical questions that needed answered before they could agree hospice care is the best approach. After this meeting our liaison met with the physician caring for the patient and updated the physician about the questions the family has and worked out a plan to have the physician meet with the family immediately. After all the questions, concerns and fears were answered by the physician the family agreed to move forward with hospice care. Our liaison met with the family again to review services again and to establish goals the family would like the hospice team to achieve while caring for their loved one. This family had two number one goals, comfort and to get the patient home. The liaison meeting with the family is also a nurse; the liaison was able to provide education to the family about the risk of moving the patient in the fragile medical state their loved one is in. The liaison educated the family about the risk of the patient expiring in the ambulance on the way home. Knowing the risks, pros and cons the family made it very clear that they wanted the patient kept comfortable and wanted to take her home in the morning. They knew that their loved one wanted to die at home and they were prepared to do whatever needs to be done to grant her that request.

At the time of the admission, Front Range Hospice nurse was concerned that she might not live until the morning but we at times underestimate the will of an individual’s soul. Her care was switched from aggressive treatment to comfort care and the family was told that we are available 24/7. We were just a phone call away and that our staff would plan to be in the hospital at 8am if not called sooner.

She lived through the night. The Front Range Hospice nurse, liaison and Chaplin arrived at the hospital at 8 am and began ensuring the patient was comfortable, supporting the anxious family with the big change to home and started to arrange for a rush delivery of the needed durable medical equipment (oxygen, hospital bed, etc), got written orders from the physicians so medications could be picked up at a local pharmacy, completed a Colorado MOST form, scheduled an ambulance to take her home. During this organized chaos, the nurse took the time to slow things down to meet with the family and gently informed them again that their loved one might die in the ambulance. She was that close to death. Knowing this the family remained firm, they wanted to take their loved one home. Our nurse with the patient on an ambulance gurney and the family following behind made their way out of the hospital to the ambulance. Our nurse followed the ambulance to the patients home and resumed caring for her immediately upon arrival.

She was home, surrounded by her family, and comfortable by 12noon. She then woke up and spent the next 3 hours talking to her family in her very familiar role as the matriarch. She then closed her eyes, went to sleep, and gently her soul left her body and she died. Her peaceful passing in her home surrounded by her loved ones was what we call a “good death”. Although the family members will miss her and mourn her loss they have those last 3 hours of pure joy that they were able to spend together.

The goals set before us at Front Range Hospice were simple. Keep her comfortable and get her home. Going the extra mile to meet the needs of a patient and their family is what we do best. Front Range Hospice exists to provide Legendary End of Life Care. Going the extra mile is the only way to meet this goal/expectation.

Front Range Hospice will always go that extra mile.

If you would like more information about Front Range Hospice please call 303-957-3101 or 970-776-8080 or email us at info@frhospice.com

Watch out for our next blog: A Major Distressful Symptom in the Dying

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When to Call Hospice

When to Call Hospice

Hundreds of times each year, patients and families say: “We wish we’d entered hospice sooner.” Patients and families can benefit most from hospice care when they seek support earlier rather than in a crisis.

Will your physician tell you when it’s time for hospice?

Often times your physician is the first to mention the possibility of hospice care. Not always, however. Some physicians hesitate to bring up hospice because they sincerely want to preserve hope for a cure. Frequently, they will continue to pursue treatment because they think that’s what the patient and family want. In other cases, such as with congestive heart failure or lung disease (COPD), it may be difficult for them to predict the rate of a patient’s decline. When a doctor does mention hospice care, he or she is simply presenting an option for comfort, which in many cases may actually lengthen life by increasing the quality of the time remaining. It is important that you and your doctor talk openly and share the same goals for maintaining quality of life.

What are some signs that a person may be ready for hospice care?

  • An increase in pain, nausea, breathing distress or other symptoms
  • Repeated hospitalizations or trips to the emergency room
  • Failure to “bounce back” after medical set-backs occur
  • Decrease in function requiring assistance for walking, eating, bathing, dressing and/or going to the toilet
  • Decreasing alertness – patient is emotionally withdrawn, sleeping more or having increased difficulty with comprehension
  • Significantly decreased appetite and weight loss

What are some signs that our family could benefit from hospice?

Caring for yourself as your loved one’s caregiver is one of the most important things you can do. Front Range Hospice supports the family in conjunction with the patient. How do you know if you or your caregivers could benefit from hospice care?

  • You or your caregivers are physically and/or emotionally exhausted from caring for you or your loved one.
  • Your family is feeling isolated because of caregiving demands or the uncertainties you feel about your loved one’s future.
  • You or members of your family appear to need emotional support to cope with the sadness of the situation.
  • You are overwhelmed by the myriad of physical, financial, emotional and spiritual concerns arising because of the illness.

Can we call Hospice even if we don’t think it’s “time”?
Absolutely. An important part of our mission is providing guidance to families about any end-of-life care issue, whether or not they’re in our program. You don’t need a physician referral to call us for information. If it appears that hospice care would be beneficial, we will, with your permission, contact your doctor to discuss it.

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Terminal Prognosis

Terminal Prognosis

By Victor Montour

J. Donald Schumacher, PsyD, President and CEO of the National Hospice and Palliative Care Organization posted information on his website bringing attention to the importance of using terminal prognosis.

In his talking points he points out as providers of hospice care, we must reframe the way we characterize our patients. He goes on to say that we have to move away from using just one single diagnosis to using a more comprehensive list of diagnosis that utilizes all diagnoses and conditions that contribute to the patient’s terminal prognosis.

In 1983 the Medicare hospice benefit’s definition was written and in it, the definition of “terminally ill” has always included the term “medical prognosis”. This definition has not changed over the years. Most hospice providers have forgotten that eligibility for hospice has always hinged on a patients terminal prognosis.

Donald goes on to say that regulators and legislators are concerned that hospice providers may be falling into a pattern of narrowly defining a patient’s condition and we are failing to deliver the full array of services that hospice providers should be responsible for.

The NHPCO strongly feels that the hospice physician is the most appropriate professional to determine whether something is related to the terminal prognosis. Front Range Hospice has always listed a primary diagnosis for hospice care and all supporting diagnosis’s so we can focus on our patient’s terminal prognosis. Providing a full picture of our patient’s current medical condition gives our caregivers, families and hospice team the best opportunity to provide Legendary Care.

If you would like more information about Front Range Hospice or what is Terminal Prognosis, please call 303-957-3101 or 970-776-8080 or email us at info@frhospice.com

Watch out for our next blog: When to Call Hospice

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Hospice Care and Nursing Facility Relationships

Hospice Care and Nursing Facility Relationships
By Victor Montour

End of life care is critically important in the skilled nursing facility. A good hospice partner should play an important role in quality end of life care. The relationship between the hospice and the nursing facility must be defined by the medical needs of the patient.

The government is now taking aggressive action against hospices and nursing facilities that request or provide illegal compensation to influence referrals. Doing so is a direct violation of the federal anti-kickback statute (AKS) and the Federal False Claims Act (FCA). The government is now using both laws to identify, prosecute and penalize hospices and nursing facilities based on a wide range of practices that are viewed as providing incentives to the nursing facilities. Some of these practices may include.

  • A hospice providing staff at its own expense to the nursing facilities to perform duties that otherwise is performed by the nursing facility staff.
  • Hospices providing services at the request of the nursing facility instead of according to the medical needs of the hospice patient.
  • Nursing facilities requesting and hospices providing services that are not considered hospices services, such as around the clock non-skilled companionship type services.
  • Hospice offering or providing free goods or services to nursing home staff, such as gift cards or lunches.

The potential consequences of violating the AKS or FCA are immediate, severe and could threaten the continued viability of many nursing facilities and hospices. The government can suspend Medicare payments to nursing facilities and hospices if there is a “credible allegation of fraud” such as an alleged AKS or FCA violation. The nursing facility and the hospice that engage in practices that violate the AKS and FCA can be prosecuted and given severe penalties.

Hospices and nursing facilities are under increased scrutiny. Under the new regulations nursing facilities must ensure and be able to show that the services they provide to resident hospice patients are consistent with the level of care that would be provided before hospice care was started. We have seen at Front Range Hospice the annual survey process that nursing facilities receive from the state and how they are now including a detailed review of patients on hospice services.

Front Range Hospice works hard to eliminate the risk of becoming an AKS or FCA statistic by avoiding the practices described earlier in this blog and any other practices not mentioned that one could interpret as a violation of the AKS or FCA laws.

If you would like more information about Front Range Hospice or Hospice Care in a nursing facility please call 303-957-3101 or 970-776-8080 or email us at info@frhospice.com

Watch out for our next blog: Terminal Prognosis

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Attending Physician – You Have a Choice

Attending Physician – You Have a Choice

By Victor Montour

Hospice beneficiaries have the right to choose their attending physician. The patient has a right to exercise his or her rights as a patient of hospice which includes the right to choose his or her attending physician.

“Attending physician” is defined as a:

(1)(i) Doctor of medicine or osteopathy legally authorized to practice medicine and surgery by the State in which he or she performs that function or action; or (ii) Nurse Practitioner (NP) who meets the training, education, and experience requirements.

(2) A physician identified by the individual, at the time he or she elects to receive hospice care, as having the most significant role in the determination and delivery of the individual’s medical care.

The election statement must include the patient’s choice of attending physician. The information identifying the attending physician should be recorded on the hospice election statement in enough detail so that it is clear which physician or NP was designated as the attending physician. The language on the election form should include an acknowledgement by the patient (or representative) that the designated attending physician was the patient’s (or representative’s) choice.

If a patient (or representative) wants to change his or her designated attending physician, he or she must follow a procedure similar to that which currently exists for changing the designated hospice. Specifically, the patient (or representative) must file a signed statement with the hospice that identifies the new attending physician in enough detail so that it is clear which physician or NP was designated as the new attending physician. The statement must include the date the change is to be effective, the date that the statement is signed and the patient’s (or representative’s) signature, along with an acknowledgement that this change in the attending physician is the patient’s (or representative’s) choice. The effective date of the change in attending physician cannot be earlier than the date the statement is signed.

Please Note: The attending physician elected by the patient may deny or refuse to follow a patient while in hospice services. This denial or refusal is not a reflection of the patient, doctor relationship. It is a result of the attending physician and his or her team not being available to the hospice team 24/7/365. Having a physician available 24/7/365 is critical for the proper management of a hospice patient. Front Range Hospice will always do what we can to ensure your attending physician continues to follow your healthcare needs. In the event we are not successful, our team will follow up with the patient, inform them of the situation and work with the patient on selecting a physician of their choice.

If you would like more information about Front Range Hospice and how we work with your attending physician please call 303-957-3101 or 970-776-8080 or email us at info@frhospice.com

Watch out for our next blog: Hospice Care and Nursing Facility Relationships

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Do You Know What Matters To Me at the End of My Life?

Do You Know What Matters To Me at the End of My Life?

By Victor Montour

It’s not easy to talk about how you want the end of your life to be. But it’s one of the most important conversations you can have with your loved ones. Front Range Hospice has partnered with the Conversation Project to help you have The Conversation.

What is the Conversation Project, You ask? Let me tell you, The Conversation Project is not about filling out Advance Directives or other medical forms. It’s about talking to your loved ones about what you or they want for end-of-life care. Whether you’re getting ready to tell someone what you want, or you want to help someone else get ready to talk. We want to help you to be the expert on your wishes and those of your loved ones. Not the doctors or nurses. Not the end-of-life experts.  You.

Pam Ware CEO/Owner of Front Range Hospice has completed the program provided by The Conversation Project so she can present this wonderful program to people in the communities we serve and beyond. When you attend The Conversation Project presentation, Pam takes you on a journey of personal experience with the end of life process.

You don’t want to talk about dying, one thing’s for sure—you’re not alone. There are a million reasons to avoid having the conversation. But it’s vitally important. Pam and the Front Range Hospice team are here to help you and your loved ones have The Conversation.

Why talk about it now you ask?  Consider the following facts before you avoid The Conversation again. There’s a big gap between what people say they want and what actually happens.

  • 60% of people say that making sure their family is not burdened by tough decisions is “extremely important”
  • 56% have not communicated their end-of-life wishes

Source: Survey of Californians by the California HealthCare Foundation (2012)

  • 70% of people say they prefer to die at home
  • 70% die in a hospital, nursing home, or long-term care facility

Source: Centers for Disease Control (2005)

  • 80% of people say that if seriously ill, they would want to talk to their doctor about end-of-life care
  • 7% report having had an end-of-life conversation with their doctor

Source: Survey of Californians by the California HealthCare Foundation (2012)

  • 82% of people say it’s important to put their wishes in writing
  • 23% have actually done it

Source: Survey of Californians by the California HealthCare Foundation (2012)

Once you attend one of the Conversation Project presentations provided by Pam, you’ll see that this isn’t really about dying—it’s about figuring out how you want to live, till the very end. The Conversation Project will help you think about the things that are most important to you. It will help you think about what you value most. It will help you think about what you can or cannot imagine living without.  “What matters to me at the end of my life is _____” the questions everyone should know the answer to.

Sharing your “What matters to me” statement with your loved ones could be a big help down the road. It could help them communicate to your doctor what abilities are most important to you—what’s worth pursuing treatment for and what isn’t.

When you think about the last phase of your life, what’s most important to you?
How would you like this phase to be?

  • Would you prefer to be actively involved in decisions about your care?
    Or would you rather have your doctors do what they think is best?
  • Are there circumstances that you would consider worse than death?
    (Long-term need of a breathing machine or feeding tube, not being able to recognize your loved ones)
  • Where do you want (or not want) to receive care?
    (Home, nursing facility, hospital)
  • What kinds of aggressive treatment would you want (or not want)?
    (Resuscitation if your heart stops, breathing machine, feeding tube)
  • When would it be okay to shift from a focus on curative care to a focus on comfort care alone?

The Conversation Project will help you think about these questions and the basics like, who do you, want to talk to? When is a good time to talk? Where would you feel comfortable talking? What do you want to be sure to say? Lastly and most important, how to start the conversation.

You may or may not already know what you want to talk about and that’s great. It’s important for you to remember that this conversation will bring up some strong emotions in some individuals. The following is a small list of suggestions to consider before, during and after you have The Conversation with your loved ones.

  • Be patient. Some people may need a little more time to think.
  • You don’t have to steer the conversation; just let it happen.
  • Don’t judge. A “good” death means different things to different people.
  • Nothing is set in stone. You and your loved ones can always change your minds as circumstances shift.
  • This is the first of many conversations—you don’t have to cover everyone or everything right now.

If you would like more information about Front Range Hospice and The Conversation Project please call 303-957-3101 or 970-776-8080 or email us at info@frhospice.com

Watch out for our next blog: Attending Physician – You Have a Choice

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