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Opioids are a critical means of relieving pain and shortness of breath in people with serious illnesses. While non-opioid analgesics such as acetaminophen (Tylenol) and ibuprofen (Advil, Motrin) may partially or fully relieve mild to moderate pain, these agents have no effect on shortness of breath, and opioids are usually required for more severe pain.
Before describing different opioids and how and when to use them, let’s review some broadly held concerns about this class of medication.
First, and perhaps most importantly, is the belief that opioids cause respiratory depression and hasten dying. There is no question that opioids can slow respiration, especially if used incorrectly or given in high doses. However, the reality is that respiratory depression with opioids in the setting of life-limiting illness is rare. A well-conducted study of opioids in cancer patients with shortness of breath conducted 30 years ago showed that these medications were effective in relieving symptoms and resulted in no significant respiratory depression (Bruera E, MacEachern T, Ripamonti C, Hanson J. Subcutaneous morphine for dyspnea in cancer patients. Ann Intern Med. 1993;119(9):906–907). Another study, conducted in 2002, showed that opioids are also safe and effective for the treatment of shortness of breath or pain in patients with chronic obstructive pulmonary disease and heart failure (Jennings AL, Davies AN, Higgins JP, Gibbs JS, Broadley KE. A systematic review of the use of opioids in the management of dyspnoea. Thorax. 2002;57(11):939–944).
Unfortunately, the belief that opioids hasten dying persists among both medical and nursing professionals and the public at large. The physicians and nurse practitioners at The Connecticut Hospice, Inc. are highly experienced in the safe use of opioids, making this concern unnecessary for the care of you or a loved one. While the use of very high doses of opioids at the very end of life in patients who are not conscious may result in some respiratory slowing, this is never the reason they are used, which is solely to effect relief of pain and shortness of breath in patients who are suffering.
Another widely held perception about opioids is that they necessarily cause addiction, or opioid use disorder (OUD). Unfortunately, as with beliefs about respiratory depression, the consensus around the medical use of opioids and OUD is nuanced and merits closer examination.
CDC Guidelines: Shaping the Landscape of Opioid Use
First, there is no question that the inappropriate use of opioids in the medical setting, especially in the 2000s, contributed to the spread of OUD and the opioid epidemic, which in 2021 took the lives of 106,000 of our friends, neighbors, and family members. Aggressive marketing of opioids for medical use and the overprescribing of opioids for both acute pain (“acute” meaning of recent onset, such as for a broken bone or dental problem) and chronic pain clearly resulted in OUD and death in some patients. Partially in response to this, the CDC (Centers for Disease Control) issued guidelines in 2016 on the use of opioids for pain. While the report made clear that the evidence on harm related to the medical use of opioids was less than optimal, they recommended nonopioid pharmacologic therapy as preferred for chronic pain, with numerous caveats and warnings for those patients with chronic pain who were prescribed opioids. For people with acute pain, no more than a 3-to-7-day supply of opioids was recommended. A wave of legislation and regulatory actions on the medical use of opioids followed, resulting in an almost 50% decline in opioid prescribing from 2016 to 2019. The CDC updated these guidelines in 2022, still recommending non-opioid therapy for chronic pain, though also stating, “No validated, reliable way exists to predict which patients will experience serious harm from opioid therapy and which patients will benefit from opioid therapy.” The report softened its position regarding acute pain, stating, “When opioids are needed for acute pain, clinicians should prescribe no greater quantity than needed for the expected duration of pain severe enough to require opioids.”
Unfortunately, these reports – and the legislation that followed -- created barriers to effective pain relief for many people with chronic pain who previously had good symptom relief with little or no harm from opioids prescribed by experienced clinicians. In the hospice context, the risk of OUD-related harm is exceedingly low when seriously ill patients with moderate to severe pain are managed by appropriately trained medical staff. This is not because expected death renders the development of OUD irrelevant, but because -- at least in my experience with thousands of patients -- OUD does not occur when pain and shortness of breath are appropriately managed with opioids. This includes many patients who were treated for and cured of serious illness or painful orthopedic conditions who successfully stopped taking appropriately prescribed opioids without developing OUD.
In short, OUD is not a concern for hospice patients – and it should be noted that both CDC guidelines specifically exclude patients at the end of life from their recommendations.
Opioids fall into three distinct chemical categories, those related to morphine, such as codeine, oxymorphone (Opana), oxycodone (including OxyContin), buprenorphine (various brand names, including Suboxone), hydromorphone (Dilaudid), and hydrocodone (Vicodin, Lortab), those related to fentanyl, and those related to methadone.
Practically, the opioids are divided by duration of action and potency. Most, including those commonly used in hospice, such as morphine and hydromorphone, provide relief of pain and shortness of breath for about 4 hours. Some of these come in longer-acting oral formulations, such as MSContin and OxyContin, which last 6 to 8 hours and only exist in oral form (remember that long-acting pills will lose their 6 – 8 hour duration of action if they are crushed). Morphine and hydromorphone also come in oral concentrates, which need only be taken under the tongue to work (making them effective for people who have difficulty swallowing), and injected forms. Typically, oral opioids (swallowed or under the tongue) take about 30 to 45 minutes to take effect, IV forms work in 5 – 15 minutes, and those given by intramuscular injection or under the skin (“sub-q”) take about 15 – 20 minutes to work. Oxycodone only has an oral form. The potency of opioids is usually contrasted with morphine and referred to as oral morphine milligram equivalent, or MME. Hydromorphone is roughly 4 – 7 times as potent as morphine, and oxycodone about 1.5 times as potent. Injected opioids are more potent than oral opioids – doses of oral opioids are reduced by half to a third when patients are no longer able to take them by mouth and they are given by injection.
At Connecticut Hospice, we generally start with lower opioid doses given on an as-needed basis for patients who have not previously used opioids (“opioid-naïve”), and we escalate the dose and give it on a scheduled rather than as needed basis as the opioid requirement becomes clear in the first day or two of their use. We always try to schedule these medications to prevent pain or shortness of breath before it starts, rather than relieving it after it has started. Opioid-experienced patients will be escalated as needed from prior dose regimens.
What’s a normal opioid dose? – very variable. Often we start at a dose of morphine 2 mg injected every 4 hours (“Q4H”) in our inpatient unit with the same dose available every 20 minutes as needed (“PRN”) should the scheduled dose be ineffective and an “in-between” dose needed for persistent pain. Hydromorphone 0.4 mg injected Q4H and Q20min PRN is also typical. We then escalate the dose as needed to fully control pain or shortness of breath. While most people need about 5 – 20 mg of injected morphine Q4H or 4 – 8 mg of injected Dilaudid Q4H for effective symptom relief, it is not unusual to get into the thousands of MMEs per day. For this reason, we often say that there is no “ceiling dose” for opioids. (Once, a patient in home care was taking 1300 mg of methadone a day for pain. She was wide awake and able to get around without sleepiness and without pain. Her only complaint was the need to take 130 ten-milligram tablets of methadone every day. By way of comparison, the dose of methadone typically used for the treatment of OUD ranges from about 50 to 150 mg daily.)
Opioid dose is adjusted based on several factors. First, does the dose relieve all the pain? If not, it needs to be increased. Second, does the pain relief last until the next dose? If not, we may need to either increase the dose or decrease the dose interval (e.g., from every 4 to every 3 hours).
How do we choose which opioid to use? Often, this depends on our pharmacy supply. Sometimes, one opioid is preferred over another, depending on a patient’s medical problem. For example, morphine is generally avoided in patients with kidney failure because it can accumulate with a resulting increased likelihood of toxicity or side effects.
Fentanyl is also commonly used in hospice. Fentanyl, which comes in a patch or “transdermal” form that is applied to the skin and replaced every three days, can be very convenient. People need a bit of body fat under the skin for it to work properly, and the medicine will not last 3 days in very underweight people with no fat under the skin.
Methadone is also a very effective opioid. Generally, it is reserved for use in patients still experiencing pain on high doses of short-acting medications such as hydromorphone and morphine. Methadone helps reverse the development of tolerance to other opioids, helping them work in patients who may have been using opioids for a prolonged period and are experiencing reduced effectiveness despite increasing dose – “tolerance.” Methadone can also help people with the painful numbness in the hands and feet – “neuropathy”-- that can affect many patients on chemo- and immune-therapy.
All opioids have side effects – though not the problems with respiratory depression and addiction often ascribed to them, as reviewed above. ALL opioids cause constipation, and patients who are not taking preventive laxatives such as senna or docusate will develop constipation that can be severe and difficult and uncomfortable to overcome. (In fact, most anti-diarrhea medications are weak opioids.) All opioids also cause sleepiness, though the effect usually wears off after a week to 10 days. In hospice, opioid-induced somnolence can be very distressing to families who want to engage with an awake and lucid loved one who is at the end of life, and finding a balance between sedation and pain control can be tricky. For some, a dose of oral methylphenidate, a mild stimulant best known as Ritalin, used for attention deficit disorder, taken in the morning and early afternoon, can help maintain wakefulness while still offering effective pain relief and allowing a night of sleep. Opioids may also cause nausea and a cloudy sensorium. While meds exist to counter these effects, such as haloperidol for nausea, rotating the opioid from, say, morphine to hydromorphone, is often all that is necessary.
Finally, there is the phenomenon of opioid-induced hyperalgesia – a rare condition in which the opioid increases pain sensitivity, resulting in sometimes severe pain from both painful and non-painful stimuli – such as simply being gently touched. This tends to be seen in patients whose pain does not get better – and seems to be getting worse – despite escalating opioid dose, sometime to very high levels. Once hyperalgesia is diagnosed and opioid dose reduced, pain often goes away.
Adjuvants are medications used to help opioids work. A benzodiazepine such as Ativan, for example, used in conjunction with an opioid in a patient with anxiety, can make the opioid more effective. NSAIDS, such as the over-the-counter analgesics ibuprofen and naproxen, have an anti-inflammatory effect and help opioids work. NSAIDS must be used with caution however, as they can cause gastrointestinal bleeding and kidney failure (typically, NSAIDs used for more than a few days are given with an antacid like omeprazole). The literature cites upwards of 16,000 deaths annually due to NSAID-induced gastrointestinal bleeding. Corticosteroid medications such as prednisone and dexamethasone (Decadron) are also powerful anti-inflammatory drugs commonly used as adjuvants for opioids, especially in people with cancer and in those with metastases (spread of cancer) to bone, which can be very painful. Like NSAIDS, corticosteroids have toxicities, including GI bleeding, and are usually used with antacids.
Dementia is a complex and debilitating condition characterized by cognitive decline, memory loss, and impaired daily functioning. As the disease progresses, patients often reach an advanced stage where their functional abilities decline significantly. The Functional Assessment Staging Tool (FAST) serves as a valuable instrument for assessing and staging the progression of dementia, particularly in its advanced stages. This blog post aims to delve into the FAST, elaborate on the score needed for hospice eligibility, describe common characteristics of end-stage dementia, and touch upon different types of dementia and highlight how the decline can vary among these types.
The Functional Assessment Staging Tool (FAST) is a widely recognized and validated instrument used to assess the functional abilities of individuals with dementia. It was developed by Barry Reisberg, MD, and his colleagues in the late 1980s to provide a structured framework for staging the progression of Alzheimer’s dementia based on functional impairment. The FAST consists of seven stages, each representing a distinct level of cognitive and functional decline.
| FAST Score | Dementia Stage | Description |
|---|---|---|
| Stage 1 | No Cognitive Decline | Normal cognitive function and memory. No observable symptoms of dementia. |
| Stage 2 | Very Mild Cognitive Decline | Slight cognitive changes attributed to aging. Forgetfulness and mild difficulty finding words. |
| Stage 3 | Mild Cognitive Decline | Noticeable cognitive impairment. Frequent memory lapses. Challenges in work or social settings. |
| Stage 4 | Moderate Cognitive Decline | More pronounced cognitive deficits. Intensified memory loss, reduced problem-solving, and attention. |
| Stage 5 | Moderately Severe Cognitive Decline | Significant cognitive and functional deficits. Memory deterioration, confusion about time/place. |
| Stage 6 | Severe Cognitive Decline | Profound cognitive impairment. Difficulty recognizing loved ones, memory loss, personality changes. |
| Stage 7 | Very Severe Cognitive Decline (Subclassification A-F) | Total functional dependence. Challenges in mobility, communication, and basic tasks. |
| 7A | Speaks 5-6 words during the day | Limited verbal communication ability. |
| 7B | Speaks only 1 word clearly | Severely restricted verbal communication. |
| 7C | No longer can walk without assistance | Mobility challenges, walking assistance required. |
| 7D | Can no longer sit up | Inability to sit up unassisted. |
| 7E | Can no longer smile | Loss of ability to smile. |
| 7F | Can no longer hold their head up | Inability to hold head up without assistance. |
The FAST score assists healthcare professionals, caregivers, and families in assessing the level of cognitive and functional decline, enabling them to provide appropriate care and support tailored to each stage. By understanding the implications of each stage, individuals can ensure the best quality of life for those living with Alzheimer’s dementia while navigating the challenges that arise throughout its progression. It's important to note that while the FAST provides a structured framework for understanding Alzheimer’s dementia progression, the exact experience can vary among individuals. Additionally, the rate at which individuals progress through the stages may differ based on factors such as the type of dementia, overall health, and individual characteristics.
Hospice care is a specialized form of medical care aimed at providing comfort, support, and quality of life for individuals with life-limiting illnesses, including advanced dementia and neurocognitive disorders. Determining hospice eligibility involves a comprehensive assessment of the patient's medical condition, functional status, and prognosis. The Functional Assessment Staging Tool (FAST) score, along with Medicare's Local Coverage Determination (LCD) for dementia and neurocognitive disorders, plays a significant role in determining hospice eligibility for individuals with these conditions. Generally, a FAST score of 7A or higher is considered indicative of end-stage dementia, indicating that the individual's cognitive and functional impairments have reached a point where specialized end-of-life care is necessary.
Individuals with a FAST score of 7A or higher often require assistance with most, if not all, activities of daily living (ADLs). These activities may include eating, dressing, bathing, toileting, and mobility. Additionally, they may experience communication challenges, memory loss, and an overall decline in cognitive abilities. The FAST score helps healthcare professionals, caregivers, and families make informed decisions regarding the appropriate level of care, including hospice services, to ensure the individual's comfort and well-being.
Medicare, the federal health insurance program in the United States, covers hospice services for eligible beneficiaries. Medicare's Local Coverage Determination (LCD) provides guidelines for determining hospice eligibility based on the specific medical condition, prognosis, and functional status of the individual. For individuals with dementia and neurocognitive disorders, the LCD outlines the criteria that need to be met for hospice coverage.
The LCD typically includes criteria related to cognitive impairment, functional decline, and the overall trajectory of the disease. It may require documentation of a qualifying FAST score, indicating the individual's advanced stage of dementia. Additionally, the LCD may consider other factors such as recurrent infections, declining nutritional status, and overall decline in medical condition. Meeting these criteria ensures that individuals receive the appropriate level of care, focusing on comfort and symptom management.
Dementia is an umbrella term that encompasses several types of neurodegenerative disorders, each with its unique characteristics, underlying causes, and progression patterns. Understanding these different types of dementia is necessary for providing appropriate care and support to individuals affected by the condition. Let's delve into the various types of dementia and their distinct features:
Each type of dementia presents its unique challenges and progression patterns. Understanding the differences is crucial for accurate diagnosis, effective management, and tailored care plans. Healthcare professionals, caregivers, and families must be knowledgeable about these variations to provide the best possible support and enhance the quality of life for individuals affected by dementia. Early diagnosis, appropriate interventions, and compassionate care play vital roles in improving the well-being of those living with dementia and their loved ones.
In the realm of dementia care, hospice services emerge as a beacon of compassion and comfort, providing a sanctuary for individuals navigating the challenging journey of advanced dementia. Hospice care becomes an essential companion during this critical phase, offering specialized support that enhances both the quality of life of patients and the emotional well-being of their loved ones. As individuals with advanced dementia face the formidable decline in cognitive and functional abilities, hospice steps in to offer solace, dignity, and a comprehensive approach to care that is as empathetic as it is effective.
For patients with advanced dementia, hospice services serve as a lifeline, offering tailored care that focuses on pain management, symptom relief, and emotional well-being. Hospice professionals possess a deep understanding of the nuanced needs of individuals in end-stage dementia, providing expert guidance to alleviate discomfort, anxiety, and distress. Through carefully designed interventions, hospice services enhance patients' comfort, fostering an environment of tranquility that nurtures their dignity and humanity. The holistic care approach encompasses not only the physical aspects of care but also addresses the emotional and psychological well-being of both patients and their families.
Loved ones of individuals with end-stage dementia can find solace in the embrace of hospice care, as it offers not only practical support but also a compassionate presence during this profoundly challenging period. Hospice teams work closely with families, helping them navigate the complexities of dementia care, offering respite, education, and emotional guidance. Family members can expect a multidisciplinary team that includes nurses, doctors, social workers, counselors, and volunteers, all dedicated to creating a nurturing environment that preserves the dignity and comfort of the patient. As the progression of dementia can be emotionally demanding for families, hospice also provides much-needed psychological support, helping loved ones cope with grief and make the most of the time they have left with their cherished family member.
In the realm of dementia care, hospice services shine as a beacon of compassion and empathy. Through their expertise, dedication, and unwavering commitment, hospice professionals offer patients with advanced dementia the opportunity to transition with grace, comfort, and respect. Families can expect not only comprehensive care for their loved ones but also a support system that holds their hands through the challenges of end-stage dementia. In the final chapter of the dementia journey, hospice care becomes a testament to the power of human connection and compassion, reminding us that even in the face of decline, every individual's story deserves to be honored and cherished.
Pearl gates, golden paths, and an eternity of love encompass peace beyond understanding that is associated with “Heaven.” However, a select number of people are granted the opportunity to wake up along the deep blue ocean while being surrounded by a sea of caring green scrubs. Suddenly, these residents amend their current thoughts by adding The Connecticut Hospice to their definition of “Heaven.”
After interning here for a summer, I experienced countless patients considering the Connecticut Hospice an oasis, while many of them explicitly referred to it as “Heaven.” The peace that the patients feel is contagious, and the relief on the family's faces can be seen as a patient is newly admitted into the hospice.
There is much irony in this depiction of hospice as a heavenly location. Hospice is supposed to be the final destination for a patient, and the positive emotions that are seen on the inside of these walls highlight the character of hospice care and the current problems in our pre-hospice healthcare system. As hospice is a place that one would assume is filled with anxiety and grief, it might be perplexing for one to hear that it is filled with love, peace, and relief.
While my experience has drawn my attention to the areas that need to be amended in terms of hospice accessibility, my experience has also drawn my attention to one distinguished aspect: Hospice is the kindest form of medicine.
A hospice patient has access to social work services, art services, and spiritual care, while their family members have access to bereavement services. Hospice care works with a patient on a holistic level to offer the patient the best experience possible. While I knew the textbook definition of the generous services provided by hospice before interning here; I did not understand its true meaning until I witnessed it.
Consider the power of music in Billy’s room for an instant. Billy was a patient with dementia who had a difficult time holding up his head and could not remember his past experiences. Billy’s room was a somber atmosphere as his family was devastated to see him in such a state. All they had left to do was hold and comfort him. One day, I heard sounds of laughter and joy coming from one of the patients’ rooms. As I approached, I could hear Billy start to hum a familiar tune and gradually lift his head to look his family members in the eye. The cheeks of those around him began to glisten, but being distinctly different than before, these were tears of happiness. Feeling a smile invade my lips, Billy’s room showed me the generosity of hospice care.
In addition, consider John. While unconscious, he had countless family and friends at his bedside telling stories of his life, including generations of family gatherings at their pool. One afternoon, I visited his bedside with the director of social work, who asked the family if he would like to see a priest. The family was content with this offer and knew that this was what John would want. A few hours later, as I was getting ready to leave work, a nurse confronted me and told me that right after the priest came and anointed John, he passed. This depiction made it undeniable that this event gave John the peace he longed for. This type of story is not unique, as countless patients wait for their families to visit and for spiritual comfort before they let go. Hospice has the privilege of facilitating these generous and comforting experiences of peace for these patients.
Lastly, consider Mary. Mary was one of the sweetest patients I have met, and she was diagnosed with a severely contagious disease. For this reason, she was not allowed to see her dog to mitigate the spread of her disease. The hospice nurses constantly watched her condition in hopes of letting her dog, Rover come in to visit. After a few days of Mary asking to see her dog, the medical staff deemed her clear to see Rover. The smile that overtook Mary’s face, along with the laughter that escaped when the staff told her she could see Rover was comparable to that of one reunited with a best friend. On the first day of the visit, Rover curled up on the bed with Mary as Mary brushed her hair. After Rover visited a few times, Mary’s spirits lifted, and her demeanor changed as she had a joke readily available every time I visited her. The bond that the two held was undoubtedly special, as her dog made her complete. Rover’s visit then became so routine that the doctors had it in their calendar so they may say hi. Rover became part of the hospice family.
A trend that I noticed is that when one is living the last few days of life, they crave to see their pets. The relief one feels while in hospice allows them to visit with their pets and do other activities that they might not be able to do in other forms of medical treatment, such as visit their horse, spend time with their dog, graduate from college, and spend quality time with their family members free of pain. Again, while I entered the hospice on my first day at work, I knew that special circumstances can be applied to hospice care, but I was not touched by these compassionate experiences until I witnessed them firsthand.
Growing close to patients like Mary, Billy, and John and witnessing their experiences is a special dynamic that I cherished while working here over the summer. These relationships were unique as patients would offer end-of-life wisdom that others only have an opportunity to receive once in their life from a grandparent. How fortunate was I to receive this type of advice daily?
However, the reality about these relationships is that they have an early expiration date. This aspect of the patient interaction helped me to cherish every moment that I was granted with a patient. Presenting itself as an emotionally taxing and rewarding experience, I realized that the hospice staff constantly encounters these emotions throughout their career. I soon learned the attributes that one must have to show undevoted care to each patient at a hospice, and I gained a newfound appreciation for the hospice staff.
I have learned that the staff that decides to go into hospice care have distinct reasons to enter this medical field. Many of the staff remark on living through a loved one’s passing and how a hospice made the passing a beautiful sight rather than a tragic event. However, regardless of one’s reason to go into the hospice field, it requires someone with strength, perseverance, courage, kindness, compassion, intelligence, and grace to care for someone during their passing and continue after witnessing a patient's passing.
As I write this blog, I come under the impression that you may have preconceived notions about what hospice care is, but I hope that you are touched by these experiences as if you had witnessed them yourself. I hope that you understand how hospice care stands apart from all other types of medicine in its holistic approach, its generosity, and its staff. As hospice care is invaluable, general in-patient care is also not easily attainable. In-patient care is expensive due to the skilled nursing, medications, room and board, and other services offered. Medicare will cover in-patient care stay costs; however, it can only be applied under specific circumstances. These circumstances are strict, and they leave many patients without the opportunity to experience hospice care. In addition, those who are homeless and only eligible for routine hospice care have no safe place to receive this care. Therefore, while I have been given the opportunity to understand the kindness of hospice care, I also take up a burden of desire to see in-patient hospice care become more accessible for all populations, and I hope that you take up this burden as well.
Compassion, generosity, and caring staff embody the kindness that hospice has to offer to those willing to accept. These are the aspects that I would want someone to understand and see when apprehensive about hospice care being right for them or when someone is first entering into hospice care. I would also like to highlight these aspects to those who are in a position to change the current governmental dynamics that surround hospice accessibility.
As I pass through the pearly gates surrounding The Connecticut Hospice and embark on my journey back into reality on my last day of work, I am wistful. I am filled with a sense of peace. I am grateful to have experienced such a beautiful form of medicine and a caring climate. I am content that the patients whom I have grown to care for and the ones to come in hereafter are in the hands of the kindest form of medicine.
No matter your age or health status, a properly executed Advance Directive is essential to assure you receive healthcare that aligns with your beliefs and wishes. Even the young and healthy may find themselves in an unanticipated medical situation in which an Advance Directive is critical.
An Advance Directive is a legal document that allows you to maintain control over the healthcare you receive should you be in a circumstance where you are unable to communicate your wishes to your healthcare providers.
Which Advance Directive to choose depends on your wishes, your understanding of the limitations of each type of Advance Directive, and your state of health. First, let’s review the healthcare representative. Before we do, though, some confusion about this form of Advance Directive needs to be cleared up. In addition to the term “healthcare representative,” you may also hear the phrases “healthcare agent,” and “durable power of attorney for healthcare.” Each of these is essentially the same, and Connecticut officially replaced the latter two terms with the former on October 1, 2006. In keeping with this, I will use “healthcare representative” going forward to refer to this form of Advance Directive.
A healthcare representative is legally designated by an individual to make their healthcare decisions should they no longer be able to communicate — for example, they are unconscious and cannot talk or write. In contrast to the other types of Advance Directive, a healthcare representative offers the most flexibility in directing doctors and other healthcare workers no matter the now-incapacitated person’s medical circumstance. A Living Will cannot be honored unless specific criteria are met and may not allow medical providers reasonable flexibility in the care they provide (discussed below). A Connecticut MOLST is also very specific, and is only legally used for people with serious illness (also discussed below).
Designating a healthcare representative is easy and does not require a lawyer or Notary Public. Your healthcare representative should be a person — many people designate a good friend -- who will follow your wishes for care with a lesser likelihood of being so emotionally involved as to find it difficult to do as you have instructed – such as a wrenching decision to discontinue life support. This is one reason why a friend may be a better healthcare representative than a close – and more emotionally involved -- family member such as a spouse, parent, or child.
Once you have decided who to designate as your healthcare representative – and once they have agreed to take on this important role (an alternate representative may also be designated should your primary representative be unavailable or decline to make decisions), it is imperative to have a conversation with them about what your wishes would be in a variety of circumstances. For example, some people may want more aggressive care should they become ill with a life-threatening though potentially curable illness than they would if they had a terminal illness with few treatment options and a lesser likelihood of recovery. However, it is impossible to anticipate all medical eventualities— I have tried— and one advantage of the healthcare representative is that he or she has freer rein to direct care in the spirit of your wishes – regardless of your exact medical circumstance -- than is allowed by a living will or MOLST.
To complete your legally enforceable healthcare representative paperwork, which requires two witnesses but again does not require a lawyer or a Notary Public, download a detailed PDF outlining Advance Directive procedure in Connecticut (including healthcare representative, Conservator of the Person, living will, and anatomic donations. MOLST cannot be completed with an online form – see below).
It is worth noting that you must be able to understand the consequences of your decisions to designate a healthcare representative. People who are significantly cognitively impaired, from dementia, for example, and are unable to direct a healthcare representative sensibly and reasonably, are not eligible. Likewise, someone with impaired consciousness is also not eligible. This is why it is important to choose one before becoming seriously ill.
For the sake of completeness, if you designated a durable power of attorney for healthcare in Connecticut before October 1, 2006, that person has the same medical decision-making rights as a healthcare representative. If you designated a healthcare agent – not a representative -- prior to October 1, 2006, that person may only make decisions about withdrawing or withholding life support, not all healthcare decisions. And if you don’t have a legal Advance Directive in Connecticut, healthcare providers will look to your next of kin for decisions. In order of preference, these are your spouse, adult child, and parent -- or other relatives if they are not available.
All in all, and especially considering the difficulty healthcare providers will have following instructions if family members disagree about the care you should receive, these factors make it clear that it makes far more sense to simply designate an up-to-date healthcare representative and to do it now.
A Connecticut “Conservator of the Person” is an individual, often a lawyer, appointed by a Probate Court and responsible for healthcare decisions for someone who is permanently unable to care for, and communicate their healthcare decisions – such as someone with dementia. Usually, Conservators are assigned to people who have not designated a healthcare representative and are no longer capable of doing so. While a Conservator is empowered to make all healthcare decisions, their role usually relates to custodial needs— such as admission to a nursing home— although they may also make decisions about specific medical interventions. If someone with a court-appointed conservator already has healthcare representative, having designated one while they were still able, the decisions of the healthcare representative about day-to-day medical care have more authority than those of the Conservator, unless the Probate Court disagrees.
These instructions require no further input from you, a healthcare representative, a Conservator, or anyone else to be followed by healthcare providers. The Connecticut Living Will provides instructions about your wishes regarding cardiopulmonary resuscitation—or CPR — mechanical ventilation (such as a respirator), artificial nutrition and hydration, (such as tube feeding), and any other specific medical requests you may choose (such as intravenous antibiotics). The Living Will, however, is very specific as to the medical circumstances in which healthcare providers can follow its directives. These include suffering from a terminal illness, permanent unconsciousness, permanent coma, or persistent vegetative state. One potential problem with the Living Will is that reasonable people may disagree on the definition of these entities. One medical provider may believe a condition is terminal, while another may feel that there are still medical treatment options. Likewise, there may be disagreement as to whether a state of unconsciousness or coma is permanent, and how exactly to define “persistent vegetative state.” Recent research in people believed to have no conscious awareness of their surroundings— part of the definition of persistent vegetative state— has shown that some patients may have more awareness than others. This may complicate matters should there be disagreement as to whether you are in persistent vegetative state. I have seen more than one situation in which it was clear that a grievously ill patient would have wanted to be taken off life support but the wording of their living will tied the hands of their healthcare providers. A healthcare representative, on the other hand, can make decisions regardless of these uncertainties, although they should not stray too broadly from your expressed wishes. For example, someone might instruct their healthcare representative to decline further medical interventions – or to stop life support -- should the likelihood of their being indefinitely and seriously neurologically impaired be high, regardless of whether they are terminally ill, “permanently” unconscious, or suffering what may or may not be persistent vegetative state. This decision is up to each individual, and is important to convey to a healthcare representative.
Technically, MOLST is not an Advanced Directive because it specifies the medical treatment that is desired at the time the form is complete, not at some imaginary future time under some unknown medical circumstance. MOLST requires the presence of an “end stage, serious, life limiting illness” or an “advanced chronic progressive frailty condition,” is usually completed by people at significant risk of hospitalization with the risk of death in the very near future, and is very specific as to desired interventions, such as different kinds of ventilator support, ICU care, IV fluid and nutrition, and others. MOLST requires the signature of and counseling by a MOLST trained and certified physician, advanced practice registered nurse (APRN), or physician assistant, and the original lime-green form must be presented for it to be valid. More information about MOLST.
Again, a valid MOLST requires you be counseled by a trained and certified MD, DO, APRN, or PA, and have a signed, original lime green MOLST form. Counseling is imperative -- I have more than once seen incorrectly completed MOLST forms – requesting, for example, both comfort-measures only and life support – unnecessarily complicate care.
The bottom line? At the very minimum, if you are able to read and understand this blog, get to work on designating your legal healthcare representative right now.
Our 52-bed inpatient facility on the waterfront in Branford is perhaps the most distinctive feature of The Connecticut Hospice, Inc. This facility affords gorgeous views of Branford Harbor and Long Island Sound, giving our patients and their families access to an outdoor space without compare - barbeques and picnics around patients’ beds with multiple family members and friends in attendance are a common summer sight (once, a patient’s horse even came to visit).
Our inpatient hospice facility also provides the kind of up-to-date symptom management techniques that typically cannot be provided in the home setting. This includes injected pain medications, IV fluids, and other “hospital-like” procedures provided to improve quality-of-life in people with terminal and life-threatening illness. (Note - such interventions are not provided to prolong life. For example, we would not provide IV fluid to an unconscious patient who is very close to the death.)
“Having to tell people they are not eligible is the worst part of my job, and I dread it.”
- Joseph Sacco - Chief Medical Officer at The Connecticut Hospice, Inc
Unsurprisingly, the lovely setting and excellent care make admission to Branford a common request, both for hospitalized people who have decided to enroll in hospice and for those in our home care program seeking a higher level of care. It is a request we wish we could grant for all – but can’t. Hopefully, this post will clarify who is and is not eligible for inpatient hospice care and help avoid disappointment among people who thought it was open to all.
This is the level of care provided for hospice patients who are at home or in a nursing home.
Respite-level care includes five days of admission to our Branford facility (many hospice organizations provide respite care in nursing homes) where care will be provided by our nurses and other staff, allowing family members to rest (some go on a quick 5-day vacation or attend to tasks they’ve had to neglect to care for their loved one).
This is 24/7 care at a patient’s bedside at home, usually provided by a nursing aide. It is only provided for a limited time – generally two days at most – at the very end of life, for patients needing intensive symptom management. Not every patient is eligible, and staff may not be available for an entire 24-hour period.
(General inpatient care, or “GIP”): Hospital-based care, with 24/7 availability of skilled nursing, 7-day/week daytime availability of an MD, DO, APRN, or PA, and 24/7 medical oversight.
Before getting into the details of eligibility for inpatient care, however, let us first make clear that these criteria are a requirement of Medicare, not of The Connecticut Hospice, Inc., and are imposed on all hospice organizations across the country. We truly wish we could provide inpatient care for all of our patients without limitation. Facing serious and terminal illness would seem qualification enough to receive the excellent care offered not only at home but in our lovely waterfront Branford hospital; unfortunately, Medicare does not agree.
The easiest way to determine whether your loved one might be eligible for inpatient care is to ask this question: Must my loved one be cared for in a hospital setting, where skilled nursing care and medical oversight is available 24/7? Or can their care feasibly be managed at home?
Remember that even people who are unconscious but restless, agitated, grimacing, crying out or showing other signs of distress can often be provided successful symptom relief with highly concentrated oral formulations of medications such as morphine or lorazepam put under the tongue, or “transdermal” medications in patch form, such as fentanyl, that do not have to be swallowed to be effective. If these medications have been tried – and Medicare often audits our records for proof that they have – and the only means of providing relief is by injected medications, this would reasonably be considered care that is not feasible at home, and inpatient care would be appropriate.
Wounds that are large and deep, those involving bone or with excessive slough (dead, discolored tissue) or that are obviously infected (I see no need to be graphic, most people are able to tell if a wound is badly infected) may be eligible for inpatient care. There is a caveat, though; wound care in the inpatient setting is not indefinite, and most wounds in hospice care patients do not improve. Once a wound care plan is in place and shown to be adequate to a patient’s needs, we will generally discharge our patient to a lesser setting, where the care will continue to be provided by our home care team in collaboration with family members, or in a nursing home.
“Delirium” is a medical condition characterized by waxing and waning level of consciousness – your loved one may be asleep one moment and climbing out of bed the next -- confusion, short term memory loss, and agitation/restlessness resulting from altered body chemistry in serious illness. It is often seen as people approach the end of life. As with other symptoms, it can sometimes be controlled with oral or under-the-tongue (“sublingual”) medicines. As with other symptoms, Medicare requires that a good faith effort be made to manage delirium at home – if this does not succeed, inpatient care may be an option.
“Sundown syndrome” is characterized by agitation, confusion, and restlessness in elders with dementia that begins when the sun goes down and it gets dark outside. Managing sundown syndrome is hit or miss – medications given at home that work for one elder (such as a sedative like lorazepam – which can sometimes cause a paradoxical increase in agitation -- or an antipsychotic medication like haloperidol or quetiapine) may not help with another. As with delirium, sundown syndrome that cannot be managed at home may be a reason for inpatient admission.
It is understandable that family members of a very sick loved one who have been providing care 24/7 become exhausted and need a break. Unfortunately, this does not qualify their loved one for inpatient admission. The good news, however, is that they will likely be eligible for respite level of care. Generally speaking, patients receiving respite care are relatively stable – which is not to say they do not have a serious illness – take their usual meds, are able to eat, do not need injected medications, and are discharged home after 5 days
It is understandable that family members of a very sick loved one who have been providing care 24/7 become exhausted and need a break. Unfortunately, this does not qualify their loved one for inpatient admission. The good news, however, is that they will likely be eligible for respite care.
Generally speaking, patients receiving respite care are relatively stable – which is not to say they do not have a serious illness – take their usual meds, are able to eat, do not need injected medications, and are discharged home after 5 days
You may be shocked to learn that imminent death – death expected in hours or days – is not a qualification for inpatient admission, most people are. Medicare insists, however, that the criteria outlined above must be met – for example, symptoms of pain or shortness of breath require injected medications for relief – to admit a patient who is at the very end of life. Most patients in hospice die at home. The good news is that our home care nurses are available 24/7 to help families caring for dying patients at home.
You may also find A Compliance Guide to Inpatient Hospice Care provided by the National Hospice and Palliative Care Organization (NHPCO) to be helpful.
You have just been diagnosed with a serious illness and your doctor is doing their best to provide you the information you need to proceed with treatment. You are terrified, overwhelmed and have no idea how to proceed. You feel like you are living out a nightmare.
Robin Kanarek was in the same situation with her husband, Joe, when their ten-year-old son, David, was diagnosed with leukemia in 1995. Robin, though, was an R.N. with over fifteen years of nursing care experience and had the medical connections and background to navigate her son's care. But as David was ready to start high school at the age of fourteen, he relapsed, and it was discovered that his leukemia was more aggressive than his original diagnosis. As he was too weak for another two-year round of chemotherapy, the Kanareks could not find a perfect match for a bone marrow transplant for David; his only chance for survival was a stem cell transplant using his then ten-year-old sister, Sarah as a donor.
Robin and her family navigated two top health centers caring for David for almost five years. David's journey ended in despair when he died in 2000 following devastating complications from his transplant. He was fifteen years old, but their journey continued; and in the midst of their profound grief, the Kanareks attempted to make sense of what had happened to heal and keep their family intact. Their grief was so insurmountable that the Kanareks decided they needed to move abroad to heal privately and focus on helping their daughter adjust to the loss of her beloved brother, become an only child, and living in a new country, and making new friends.
It was in London that Robin started her journey to heal and give her family's life some semblance of normalcy. Two years of intense grief counseling helped her realize that she could share what she had learned from her devastating experience with her son's illness. Soon she began volunteering and fundraising for a U.K. organization that cared for adolescents and young adults with cancer. Robin realized that little attention had been given to the psychological, social or spiritual aspects of care for David or themselves. She soon learned about a subspecialty in 2006—palliative care.
Most people, including health care providers, are unaware of palliative care's many benefits. Many equate palliative care with hospice, but it is not. Palliative care can be introduced at any time of a serious diagnosis and in conjunction with curative treatment, which hospice does not provide. Palliative care is ideally provided by an interdisciplinary team that includes physicians, nurses, social workers, chaplains, pharmacists, and allied health providers working together to address pain management, education, and medical, emotional, spiritual, and psychological support. Improving the quality of life for those who suffer from a serious or life-threatening illness is the key tenet of palliative care.
In an effort to help other families with the unique and challenging needs of cancer treatment, Robin wrote her first book, Living Well with a Serious Illness: A Guide to Palliative Care for Mind, Body, and Spirit. The topic of this book is timely. According to the U.S. Census Bureau, the number of individuals over 65 has surpassed those under the age of five. Never before have there been so many people over the age of fifty, the age when, statistically, the greatest incidence of serious and life-threatening diagnoses begins. According to the Centers for Disease Control (CDC), six in ten adults in the U.S. have a chronic disease (four in ten adults have two chronic diseases). These numbers point to a growing need for palliative care, particularly as modern medicine offers more aggressive treatment options for the seriously ill.
The public needs to be educated on the benefits of palliative care. Healthcare providers also require clarification on what palliative care encompasses. Unfortunately, there has been very little written in easy-to-understand language to educate the average consumer; most books on palliative care are textbooks geared toward healthcare professionals. There is a national conversation about recognizing the limits of current medicine and the importance of seeing "patients" as individuals who need and benefit from the care of mind, body, and spirit. That philosophy is the essence of palliative care.
Robin Bennett Kanarek, RN, is the president of the Kanarek Family Foundation, established in 2006, whose mission is to improve the quality of life for those affected by serious, life-threatening conditions through promoting, integrating, and educating the medical industry and the public about palliative and supportive care in all areas of health care. She lives in Greenwich, Connecticut. Her first book, Living Well with a Serious Illness: A Guide to Palliative Care for Mind, Body, and Spirit, is published by Johns Hopkins University Press. It can be purchased on Amazon.
Ms. Kanarek has performed a great service for all of us in the palliative care field. She has managed to write a book that explains, in layman's terms, what everyone should understand about the uses and benefits of palliative care. Even medical professionals will benefit from her discussions of how patients, their families, and their caregivers should be interacting when someone has a serious illness. This book should be on every bookshelf, to be read and reread as the need arises.
―Barbara Pearce, President and CEO, The Connecticut Hospice, Branford, CT
This book is a gift to both clinicians and patients. Robin shared her story from the perspective of a healthcare giver, a wife, and a mother. She speaks to the heart of how the patient and entire family is affected in the face of serious illness. The gift is in the sharing and learning we can all do to ensure David and the Kanarek family's gift of their most private and painful moments will contribute to our better journey.
―Diane P. Kelly, President, Greenwich Hospital; EVP, Yale New Haven Health
This book is essential reading for anyone who will live with a serious illness or care for someone with one―which is essentially everyone. Kanarek writes as a mother who shares the loss of her son and has spent three decades sharing her experience with others to support their journeys. It is a book written from the heart and is both a practical guide as well as a deep reflection of how to navigate the challenging, and sacred, time of the end of life.
―Betty Ferrell, PhD, FAAN, FPCN, CHPN, Professor, City of Hope Medical Center, Duarte, CA
Robin Kanarek is the ideal translator of palliative care for people living in the real world. She is a nurse and knows our health care system. She cared for her own seriously ill child. If someone you love is sick, this book is your guide to the oasis that is palliative care, often hidden in plain sight, but yours for the asking.
―Diane E. Meier, MD, Center to Advance Palliative Care, Icahn School of Medicine, Mount Sinai Hospital, New York City
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