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Announced in 1978 by then President Jimmy Carter, the month was established to recognize the efforts of those who provide end-of-life care, and to help raise awareness of the growing hospice movement. By the time of this designation, Connecticut Hospice, America’s first, had already been providing high-quality care to hospice patients for 5 years.
We have come a long way since 1978. President Carter is now a hospice patient. Hospice is well-established in the United States and around the world; 1.7 million American Medicare beneficiaries will avail themselves of hospice care in 2023.
Ironically, despite this progress, most people do not know the difference between hospice and palliative care. So, in honor of National Hospice and Palliative Care Month, this blog will be a primer on two very distinct medical specialties.
Hospice is a benefit -- an entitlement, like Social Security, provided by Uncle Sam -- available to people whom a physician estimates to have six months or less to live if their illness progresses through its natural course and who have declined further treatment in favor of focusing on the quality of the life they have remaining. Most hospice programs are financed by Medicare – at no cost to patients -- though many other insurers, including Medicaid, offer hospice benefits. All hospices must provide a specific set of services to the patients they enroll, including skilled nursing and medical services, social work, chaplaincy, volunteer, and other professional services.
While both hospice and palliative care are part of the same medical specialty, complete with post-residency fellowships and, since 2006, board certification, palliative care is distinct from hospice. Appropriate for all people with serious illness, including those still seeking treatment of their disease -- an important distinction from hospice -- palliative care helps patients and their loved ones understand the condition, treatment options, and likely disease trajectory so they may make informed choices that align with their goals and wishes. It also provides expert management of symptoms such as pain, shortness of breath, and nausea, helps people obtain non-medical assistance like help in the home, and may even provide medical management of the disease and its complications.
I had the privilege of providing palliative care to two patients who exemplify the specialty at its best. One, a woman in her fifties, was diagnosed with a malignancy and referred to a home palliative care program I worked with. She was suffering from pain and anxiety, and the nurses, social workers and I collaborated to provide her relief from these symptoms with counseling, support, and medications. Literate, educated, and a self-starter, she then set about finding a leading physician to offer treatment for her disease.
When she returned from her first appointment she was confused.
“What did he say?” I asked during a home visit.
“I didn't understand a word of it,” she told me, exasperated. “I’m not even sure he was speaking English.”
This was not at all uncommon. Though well-intended, doctors often struggle to make medical information understandable for their patients, who typically do not have medical training. Palliative care doctors specialize in exactly this kind of conversation.
“Would you like me to call him and find out what he can do for you and let you know?” I asked.
She did. I returned to her home a few days later and got straight to the point, cutting through the medical esoterica that had characterized my discussion with the surgeon -- and, apparently, what he had told her. “The surgeon said you have a better than 80% chance of being cured with an operation,” I told her.
“Would you do it?” she asked.
“Those are pretty good odds,” I said. “I'd go for it.”
That was more than five years ago. I still get Christmas cards from her. Cured, she returned to her life and no longer needs palliative care.
The second was a man in his late 60s. Retired, he had recently lost his beloved wife, and suffered from advanced cancer that left him fatigued and mostly unable to get up from the couch in his living room. He'd been suffering from cancer for 10 years; his oncologist had managed again and again to find a treatment to prolong his life.
He had thought about his condition and was direct about his wishes. “So long as my doctor can keep my cancer in check,” he said, “I'm going to keep getting treated. But when it stops working, I'm going to enroll in hospice so I can die in comfort.”
I was impressed. “What do you like to do?” I asked. “For fun?”
“Fish,” he said without hesitation. “Trout. Catch and release. I even have a blog. But I'm too tired for that now,” he said with a resigned frown. “I can barely get off this couch.”
I had some tricks up my sleeve. I started him on a brief course of high dose corticosteroids and amphetamine. He virtually leapt from his couch, donned his floppy fishing hat and khaki vest, festooned with flies he had tied himself, climbed into his pickup truck, picked up his son, and spent a day catching trout and throwing them back into one of his favorite fishing spots.
I stopped the medications and he flopped back on his couch. Six months later he was admitted to our inpatient hospice facility. Treatment was no longer holding back his cancer and he had worsening shortness of breath.
I stopped in at his bedside on the morning of his admission. “How can we help?” I asked.
He answered with his characteristic lack of hesitation. “I want to stop feeling short of breath, I want to see my son get married, and I want to die in peace,” he replied.
His son stood on the opposite side of the bed. “When are you getting married?” I asked him.
“In three months,” he replied.
Later, we spoke in the hall. “You're getting married tomorrow at your dad's bedside,” I said.
“I think you misunderstood doc,” he said. “I'm getting married in three months.”
“I understood,” I said, “but I'm asking you to get married tomorrow at your dad's bedside.”
He and his fiancé married the following day in a ceremony attended by most of the hospice staff. He wore a tuxedo and she a wedding gown. There was music, dancing and champagne – right in his father’s room. His father could not stop smiling. He died peacefully the following day.
Connecticut Hospice is proud to launch a palliative care program, which will be fully operational in December. Our APRN, social workers, and chaplaincy will be offering palliative care to patients who are self-referred, or referred by friends, family, or by their doctors. We will see patients in a brand-new clinic in our inpatient facility in Branford, by telehealth, and in people's homes or in skilled nursing, assisted living, or independent living facilities.
For more information about our new palliative care program, call 203-315-7540.
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.
When it comes to managing pain and shortness of breath at the end-of-life, opioids play a crucial role in providing comfort and relief. Like a fruit basket that offers a variety of flavors and textures, opioids also come in different forms, each with its unique properties and uses. In this blog post, we'll delve into the differences between two commonly prescribed opioids: morphine and Dilaudid (hydromorphone). These two opioids are most commonly used because when swallowing becomes difficult, they can be injected through an IV or under the skin, whereas some other opioids cannot.
Morphine: The Versatile and Widely Used Fruit
No fruit basket is complete without an apple, and in this analogy, that's morphine! Morphine is among the most well-known and widely used opioids for managing pain, especially in end-of-life care. It is also the oldest, original opioid. It is derived from the poppy plant. Morphine is highly effective in addressing various types and intensities of pain, making it the go-to option for many healthcare providers because, like the apple, it comes in a vast array of preformulated compounds, administration routes, and the dosage can be tailored specifically to the patient’s individual needs. Due to its long-standing presence and extensive research, morphine is well-understood and has established dosing guidelines, making it a reliable choice for pain management and breathlessness.
Dilaudid: The Specialized Fruit for Patients with Kidney Damage
Now, let's shift our attention to Dilaudid, a distinctive fruit in the opioid fruit basket. Think of Dilaudid as a juicy, tropical mango with a unique flavor and texture that caters to specific needs. Dilaudid, or hydromorphone, is a potent opioid analgesic that provides powerful pain relief, particularly for patients with kidney damage. In patients with impaired kidney function, the body may struggle to eliminate or metabolize certain drugs effectively, including morphine. Here's where Dilaudid steps in as a suitable alternative. Dilaudid undergoes a different metabolic pathway, making it less dependent on kidney function for elimination. This characteristic allows healthcare providers to choose Dilaudid for patients experiencing severe pain or for those with renal insufficiency. Its potency makes it effective in smaller doses compared to morphine which is why it is also sometimes a preferred choice.
Opioids: Other Fruit in the Basket
Although we covered the two most frequently used opioids, it is worth mentioning that in addition to these, there are many other different classes of opioids a healthcare provider can choose from. Some well-known ones are Oxycodone, Methadone, Fentanyl, Codeine, and Hydrocodone, to name a few. These each have unique properties that may influence whether they are preferred over morphine or Dilaudid (hydromorphone). In particular, Methadone and Fentanyl are compounded to be potent, long-acting opioids, which means their effects can last days. Fentanyl can even be used as a patch on the skin and is especially helpful if patients need consistent opioids to manage their symptoms but are having difficulty swallowing. Use of these medications are tailored to the specific opioid needs of the patient and usually are started after a short-acting opioid like morphine, oxycodone, hydrocodone, or hydromorphone is already in use.
One crucial consideration in end-of-life care is striking the delicate balance between alertness and the relief of suffering. Patients and their loved ones often desire pain relief, but they also want to remain awake and engaged with their loved ones during their final moments. In the community, there is a widely held belief that opioids cause excessive sedation. Although it is true that some people are more sensitive to the sedative effects of opioids (especially if they have never been on an opioid before), the science has actually proven that this drowsiness effect usually improves after several days of consistent opioid use. Unfortunately, many patients arrive at hospice within their final days and believe this excessive drowsiness is due to the opioids when it is much more likely driven by disease progression instead.
It is again worth reiterating that although opioids are very good at relieving most types of pain, they are also equally used at relieving shortness of breath. This may be especially important for patients and their families if the patient has an illness affecting their lung function. Often at the end-of-life, the body’s weakness or disease progression causes it to be much harder for the patient to take regular deep breaths. This could lead to the sensation of “air hunger,” which can cause quite a bit of anxiety for patients and loved ones alike. Opioids work to keep breathing calm and level and greatly help to reduce this potentially frightening sensation.
At some point in the journey, the patient’s family or designated person might have to collaborate with the healthcare provider on the balance of using opioids and other powerful comfort medications to relieve suffering at the cost of alertness. It is crucial to openly discuss pain management goals, preferences, and concerns with healthcare providers. Patients, if able, should actively participate in the decision-making process, ensuring their unique needs are considered by the providers as well as their loved ones before they lose the opportunity to say their wishes. If they are unable to engage in these discussions, then their designated person should make these goals based on what they feel the patient would want and what’s in their best interest. By establishing an open line of communication, patients and healthcare professionals can work together to find the perfect balance of pain relief and alertness and ultimately enhance the patient's end-of-life experience.
Choosing the Right Fruit: Collaborating with Healthcare Providers
Just as different fruits cater to various tastes and dietary needs, selecting the appropriate opioid for end-of-life pain management requires careful consideration and collaboration between healthcare providers and patients. When making decisions about pain management, healthcare professionals consider multiple factors, including the patient's pain intensity, overall health, medical history, and potential drug interactions. In some cases, other opioids like fentanyl, methadone, or oxycodone might also be considered.
Remember, pain management decisions should always be made in consultation with healthcare professionals who possess the knowledge and expertise to provide individualized care. By working together, patients and healthcare providers can find the most suitable opioid, ensuring that end-of-life pain is minimized and comfort is maximized. Just as the fruit basket presents a variety of options, so too do the opioids, providing choices for tailored pain relief during life's final stages.
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
Many articles have been written recently about the extraordinary life of President Jimmy Carter. He has been praised for having the richest post-presidential life of any former President, although there is certainly a lot of competition (beginning with William Howard Taft, who went on to serve as Chief Justice of the US Supreme Court). No one can deny, however, that Carter has done a great deal for humanity in his “golden” years. He even won the Nobel Peace Prize for his efforts.
At 98, he has outlived every other former President, and is clearly an outlier in longevity, as in so many other areas of his life. For the past six or seven years, he has been battling metastasized melanoma. With lesions even on his brain, he appears from a distance to have continued to have a somewhat normal life. Now, given his condition and his advanced age, he has chosen to end treatment, and enter hospice care at home.
As he has in other ways, he is teaching us much about how to end a long and full life. Those of us who are in the hospice field hope that he lives for many months, since one of our major challenges remains getting people into hospice care in time to reap its benefits. We hope that he is accessing social work, pastoral care, equipment, and palliative treatment.
It is likely that anyone his age would meet the basic requirements for entering hospice care. All that is necessary is a doctor’s referral, citing at least one condition that, left untreated, could result in death within a six-month period. At 98, who would question that? In addition, providers look to assess the needs of patients by considering whether they have problems with, or require assistance with, ADL (Activities of Daily Living). It seems likely again, given that he is so old, that he would need help with at least some regular tasks.
While palliative care is provided for the relief of symptoms, it has a very different aim than curative treatment. It is intended to make the patient comfortable. Not all nonagenarians have pain, but the majority probably have some arthritis, stiffness, or just aches and pains. They could have trouble swallowing, have a level of memory loss or dementia, or suffer from lasting effects of past medical treatment. Making someone’s remaining time more comfortable is a primary goal for hospice workers.
Jimmy Carter’s deep Christian faith has been well documented. Even he, though, is now going through a new experience. Whether he has concerns for himself, for his 95-year-old wife, Rosalyn, or for other relatives, there may well be issues of closure or unfinished business. Pastoral care professionals and social workers are included on a hospice team, and they begin by assessing risks of bereavement for those who will survive, as well as by determining what support would be useful for the patient him/herself. These staff members also assist with the practical aspects of the dying process-funeral arrangements, paperwork, financial questions, and other issues of concern. Although we can all marvel at the length of his life, that often does not diminish the grief felt by the family, or ensure that all necessary steps have been successfully completed.
If the Carters are fortunate, their hospice will offer arts therapy and support, including home visits. While this is not a condition of participation for Medicare reimbursement to a hospice, it is a wonderful additional service that many of us fundraise to be able to offer. Music can often unlock memories and even speech in patients who have stopped talking, and arts therapists can help all members of a family to express their feelings with concrete objects or drawings. Our hospice even has an artist who provides portraits of the patient, at the request of families. These are often used at memorial services, and can serve as beloved mementos.
We often have spouses, in particular, say that they “breathed a sigh of relief” when the hospice team took over, and they could feel supported and freed from worry. People in the home, when hospice care is given there, are given instruction on the use of “comfort packs”, which are left in case of increased pain or new symptoms that arise between nursing visits, as well as on other equipment and safety procedures. They are also given a number to call, at any time of the day or night, instead of 911, if they have chosen DNR status. Rather than be taken by ambulance to the hospital, they can be talked through issues or questions by a member of the hospice team. After the patient has passed, the family can immediately reach out to hospice, who will come and do the legal death pronouncement, so that the body can be removed. While there is no required timetable for any of this, the family can count on its hospice to be there for them.
We wish for President Carter and his family the peace and joy that can come with a period of reflection, togetherness, and letting go. Hospice staff members often comment that it is a privilege to spend time with those who are dying, and that there is often more joy than sorrow, made more likely by the absence of pain or the effects of treatment. In addition to his years of national and charitable service, we are grateful to him for bringing attention to the benefits of hospice care. He is once again leading by example, and we will all be better for it.
USA Today: Jimmy Carter is in hospice care. Explaining the end-of-life care over 1 million Americans choose.
New York Times: How to Choose a Hospice
New York Times: How Does Hospice Care Work?
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