Palliative Care

It is important that we have a common understanding of what hospice care is before answering this question. Hospice provides care for a patient who has a terminal diagnosis, with expectation of a prognosis of 6 months or less, and is usually no longer seeking curative treatment. Hospice focuses on relieving symptoms and supporting patients and is provided in the home, in a residential setting, or in the hospital. Another way of looking at it, is that hospice care provides palliative care for those approaching the last stages of life. I find that the best first step in addressing discussions about hospice with patients and families is to first understand what they know about their underlying diagnosis, their treatment options and how their illness is impacting their quality of life. I want to also understand what is most important to a patient and family when the prognosis is limited. Once I know what a patient and family hope to achieve and what is most important to them I can best help to guide treatment and make use of hospice services to help maximize their quality of life and help them to achieve their goals. It is important that we have a common understanding of what hospice care is before answering this question. Hospice provides care for a patient who has a terminal diagnosis, with expectation of a prognosis of 6 months or less, and is usually no longer seeking curative treatment. Hospice focuses on relieving symptoms and supporting patients and is provided in the home, in a residential setting, or in the hospital. Another way of looking at it, is that hospice care provides palliative care for those approaching the last stages of life. I find that the best first step in addressing discussions about hospice with patients and families is to first understand what they know about their underlying diagnosis, their treatment options and how their illness is impacting their quality of life. I want to also understand what is most important to a patient and family when the prognosis is limited. Once I know what a patient and family hope to achieve and what is most important to them I can best help to guide treatment and make use of hospice services to help maximize their quality of life and help them to achieve their goals.

Patients may not address “end-of-life issues” because of stress and anxiety. In my experience, I have found that patients are often under more stress and anxiety when discussions about prognosis and goals of care have not occurred. People approach a cancer diagnosis and treatment differently, influenced by their personalities, life experiences, education as well as personal and spiritual beliefs. It is important to first understand how a patient is coping with and understanding their illness and prognosis. Stress and anxiety often arise from misunderstanding and/or fear about the underlying illness. If this is the case, starting a dialogue with the patient, to clarify misconceptions and openly address patient and family fears, will help to dissipate stress and anxiety and allow an open discourse about prognosis and patient wishes for care at the end of life. Patients may not address “end-of-life issues” because of stress and anxiety. In my experience, I have found that patients are often under more stress and anxiety when discussions about prognosis and goals of care have not occurred. People approach a cancer diagnosis and treatment differently, influenced by their personalities, life experiences, education as well as personal and spiritual beliefs. It is important to first understand how a patient is coping with and understanding their illness and prognosis. Stress and anxiety often arise from misunderstanding and/or fear about the underlying illness. If this is the case, starting a dialogue with the patient, to clarify misconceptions and openly address patient and family fears, will help to dissipate stress and anxiety and allow an open discourse about prognosis and patient wishes for care at the end of life.

When approaching a patient with pain, the first step is to do a very thorough pain history to determine the etiology of pain, severity of pain, duration of the pain and the impact of the pain on the patient’s life and physical functioning. The etiology of the pain will guide us to understand the expected duration of the pain and the approaches that are most likely to be effective in treatment. For cancer patients in moderate to severe pain, opioid pain medications are often effective. We may use opioid pain medications in conjunction with acetaminophen or non-steroidal anti-inflammatories (NSAIDs). Our goal in treating patients is to get a stable control of pain with a standing medication regimen, with the availability of “breakthrough” or “rescue” medications for acute exacerbations of pain that may occur. When starting patients on new pain medication regimens we make sure to have close follow-up with patients to assess for efficacy as well as side effects of the regimen. We also make use of other members of the interdisciplinary palliative care team, including our massage therapists to assist in pain management. Certain cancer pain syndromes may also be amenable to interventional procedures such as nerve blocks, in which case we work with and make referrals to our colleagues in Anesthesiology who specialize in interventional pain management. When approaching a patient with pain, the first step is to do a very thorough pain history to determine the etiology of pain, severity of pain, duration of the pain and the impact of the pain on the patient’s life and physical functioning. The etiology of the pain will guide us to understand the expected duration of the pain and the approaches that are most likely to be effective in treatment. For cancer patients in moderate to severe pain, opioid pain medications are often effective. We may use opioid pain medications in conjunction with acetaminophen or non-steroidal anti-inflammatories (NSAIDs). Our goal in treating patients is to get a stable control of pain with a standing medication regimen, with the availability of “breakthrough” or “rescue” medications for acute exacerbations of pain that may occur. When starting patients on new pain medication regimens we make sure to have close follow-up with patients to assess for efficacy as well as side effects of the regimen. We also make use of other members of the interdisciplinary palliative care team, including our massage therapists to assist in pain management. Certain cancer pain syndromes may also be amenable to interventional procedures such as nerve blocks, in which case we work with and make referrals to our colleagues in Anesthesiology who specialize in interventional pain management.

As stated in another answer (http://talkabouthealth.com/where-can-we-learn-more-about-the-current-standards-for-palliative-care-for-oncology), palliative care is specialized medical care for patients and families facing a serious illness and is appropriate throughout the continuum of a serious illness starting from the point of diagnosis. Palliative care can be provided by the oncology team, in the form of assessment and treatment of physical symptoms related to the cancer diagnosis or as a result of the anti-cancer therapies themselves. Excellent control of symptoms such as nausea and pain can help a patient to maintain adherence to anti-cancer treatment regimens. Palliative care specialty level consultation services should be utilized in situations where the symptom presentation is complex or the patient and family would particularly benefit from an interdisciplinary palliative care team. As stated in another answer (http://talkabouthealth.com/where-can-we-learn-more-about-the-current-standards-for-palliative-care-for-oncology), palliative care is specialized medical care for patients and families facing a serious illness and is appropriate throughout the continuum of a serious illness starting from the point of diagnosis. Palliative care can be provided by the oncology team, in the form of assessment and treatment of physical symptoms related to the cancer diagnosis or as a result of the anti-cancer therapies themselves. Excellent control of symptoms such as nausea and pain can help a patient to maintain adherence to anti-cancer treatment regimens. Palliative care specialty level consultation services should be utilized in situations where the symptom presentation is complex or the patient and family would particularly benefit from an interdisciplinary palliative care team.

I should start with clarifying the definition of palliative medicine. Palliative medicine is care for patients and families facing serious illness. Palliative care makes use of an interdisciplinary team to address the impact of a serious illness on a patient’s physical, psychosocial and spiritual well-being. Palliative care is appropriate throughout the continuum of a serious illness, starting at the point of diagnosis. Unfortunately, all too often physicians and patients believe that palliative care is “end-of-life” care and that one must make a choice between active cancer therapy and palliative care. We know that palliative care relieves suffering through detailed attention to the assessment and treatment of pain and non-pain symptoms and consequently improves patient and family quality of life.

When provided concomitantly with anti-cancer therapy, palliative care may prolong life. In a study of patients with advanced lung cancer those who received palliative care with anticancer-therapy from the time of diagnosis actually lived longer than patients with advanced lung cancer who received anti-cancer therapy alone. Largely due to the results in this lung cancer study, as of February 2012, The American Society of Clinical Oncology ASCO now recommends “combined standard oncology care and palliative care should be considered early in the course of illness for any patient with metastatic cancer and/or high symptom burden”

Getpalliativecare.org (http://www.getpalliativecare.org) is a wonderful resource for patients and families to learn more about palliative care. The website provides clear and comprehensive information for patients and families facing serious illnesses including cancer. The site provides information about palliative care and advanced care planning and assists patients and families in identifying palliative care providers in their communities. It also provides resources and references for more disease specific information. I should start with clarifying the definition of palliative medicine. Palliative medicine is care for patients and families facing serious illness. Palliative care makes use of an interdisciplinary team to address the impact of a serious illness on a patient’s physical, psychosocial and spiritual well-being. Palliative care is appropriate throughout the continuum of a serious illness, starting at the point of diagnosis. Unfortunately, all too often physicians and patients believe that palliative care is “end-of-life” care and that one must make a choice between active cancer therapy and palliative care. We know that palliative care relieves suffering through detailed attention to the assessment and treatment of pain and non-pain symptoms and consequently improves patient and family quality of life.

When provided concomitantly with anti-cancer therapy, palliative care may prolong life. In a study of patients with advanced lung cancer those who received palliative care with anticancer-therapy from the time of diagnosis actually lived longer than patients with advanced lung cancer who received anti-cancer therapy alone. Largely due to the results in this lung cancer study, as of February 2012, The American Society of Clinical Oncology ASCO now recommends “combined standard oncology care and palliative care should be considered early in the course of illness for any patient with metastatic cancer and/or high symptom burden”

Getpalliativecare.org (http://www.getpalliativecare.org) is a wonderful resource for patients and families to learn more about palliative care. The website provides clear and comprehensive information for patients and families facing serious illnesses including cancer. The site provides information about palliative care and advanced care planning and assists patients and families in identifying palliative care providers in their communities. It also provides resources and references for more disease specific information.

Throughout the past two decades, the role of radiation therapy in treatment of ovarian cancer has been consistently diminishing. This is due to two major factors. The first factor is the increasing knowledge that most of ovarian cancers, especially the ones which are not localized and require more than surgical intervention i.e. adjuvant treatment, are considered either systemic disease or at least putting the entire abdominal cavity at risk of recurrence. The second factor is the advances made in chemotherapy, not only by having better supportive care so that the patients can tolerate chemotherapy better but also in the number new chemotherapy agents.

When radiation therapy was routinely used for ovarian cancer, it was given in the form of whole abdominal radiation. That is the radiation was covering all and every tissue below diaphragm down to the pelvis. These large radiation fields were very difficult to tolerate. Large does could not be delivered to these large fields and patients had to endure many side effects particularly nausea, vomiting, and diarrhea. Later on injection of Phosphorus-32, a radioactive isotope of phosphorus into the abdominal cavity replaced the external radiation to the whole abdomen. Nowadays even that has been mostly replaced by injection of chemotherapy agents into the abdominal cavity.

Currently surgery and chemotherapy are the mainstays of treatment of ovarian cancer and as opposed to many other cancers, repeating surgery either in the form of debulking the disease or for second look, takes place before considering radiation therapy. That has limited the role of radiation therapy in treatment of ovarian cancer to treating the metastatic areas. That is if the cancer spreads to the bone, brain or other organs, radiation may be used to address those areas in a palliative manner. Also if disease becomes resistant to second and third line chemotherapy agents, and surgery is not an option either, radiation can be used to locally treat the residual or progressive disease at the primary site. Throughout the past two decades, the role of radiation therapy in treatment of ovarian cancer has been consistently diminishing. This is due to two major factors. The first factor is the increasing knowledge that most of ovarian cancers, especially the ones which are not localized and require more than surgical intervention i.e. adjuvant treatment, are considered either systemic disease or at least putting the entire abdominal cavity at risk of recurrence. The second factor is the advances made in chemotherapy, not only by having better supportive care so that the patients can tolerate chemotherapy better but also in the number new chemotherapy agents.

When radiation therapy was routinely used for ovarian cancer, it was given in the form of whole abdominal radiation. That is the radiation was covering all and every tissue below diaphragm down to the pelvis. These large radiation fields were very difficult to tolerate. Large does could not be delivered to these large fields and patients had to endure many side effects particularly nausea, vomiting, and diarrhea. Later on injection of Phosphorus-32, a radioactive isotope of phosphorus into the abdominal cavity replaced the external radiation to the whole abdomen. Nowadays even that has been mostly replaced by injection of chemotherapy agents into the abdominal cavity.

Currently surgery and chemotherapy are the mainstays of treatment of ovarian cancer and as opposed to many other cancers, repeating surgery either in the form of debulking the disease or for second look, takes place before considering radiation therapy. That has limited the role of radiation therapy in treatment of ovarian cancer to treating the metastatic areas. That is if the cancer spreads to the bone, brain or other organs, radiation may be used to address those areas in a palliative manner. Also if disease becomes resistant to second and third line chemotherapy agents, and surgery is not an option either, radiation can be used to locally treat the residual or progressive disease at the primary site.

Every medical oncologist wants to cure their patients. The problem has been when to stop. The general dictum that has guided medical oncology for 50 years can be summed up as “if some is good, more is better”. This regrettably may not be true. As a rule, patients will manifest benefit from therapy within 2-3 cycles. Thereafter, treatment is continued until complete remission, failure to respond, or intolerable toxicity. We witnessed the most glaring example of over treatment during the era of bone marrow transplantation for solid tumors which proved toxic and ineffective for most cancers, the exception being leukemias, myelomas and some lymphomas. Our preference is to use the right drugs from the start to achieve the best response with the least toxicity. Depending upon the tumor type, we complete treatment with 2 additional cycles beyond complete remission or in the highest risk cases, we may suggest a form of maintenance treatment. All of these therapies are administered with a very close attention to quality of life. Every medical oncologist wants to cure their patients. The problem has been when to stop. The general dictum that has guided medical oncology for 50 years can be summed up as “if some is good, more is better”. This regrettably may not be true. As a rule, patients will manifest benefit from therapy within 2-3 cycles. Thereafter, treatment is continued until complete remission, failure to respond, or intolerable toxicity. We witnessed the most glaring example of over treatment during the era of bone marrow transplantation for solid tumors which proved toxic and ineffective for most cancers, the exception being leukemias, myelomas and some lymphomas. Our preference is to use the right drugs from the start to achieve the best response with the least toxicity. Depending upon the tumor type, we complete treatment with 2 additional cycles beyond complete remission or in the highest risk cases, we may suggest a form of maintenance treatment. All of these therapies are administered with a very close attention to quality of life.

Radiation therapy is used in the palliative settings for nearly all types of cancers. For example, it can be used to treat pain related to bone metastases from different primary sites, improve respiratory symptoms from a tumor blocking airways, improve swallowing conditions related to esophageal tumors. Radiation therapy can also be used in the prophylactic palliative setting for brain metastases, lesions in vertebral bodies before they cause pain or neurological symptoms, or impending bone fractures. For the majority of times a tumor causes symptoms there is often a role for radiation to address and improve them palliatively. Radiation therapy is used in the palliative settings for nearly all types of cancers. For example, it can be used to treat pain related to bone metastases from different primary sites, improve respiratory symptoms from a tumor blocking airways, improve swallowing conditions related to esophageal tumors. Radiation therapy can also be used in the prophylactic palliative setting for brain metastases, lesions in vertebral bodies before they cause pain or neurological symptoms, or impending bone fractures. For the majority of times a tumor causes symptoms there is often a role for radiation to address and improve them palliatively.

It is very common for a family to be faced with making difficult decisions about end of life care. The palliative care service can be helpful in this situation. Palliative care services are experts at being sure the right medications are being used to provide comfort and awareness, coordinating family meetings, and discussing prognosis. They can also assist in weighing the benefits or risks of a life supporting therapy such as going on a ventilator or dialysis. Having an advanced directive that designates a surrogate decision maker is important but many do not have one when a crisis occurs. It is very common for a family to be faced with making difficult decisions about end of life care. The palliative care service can be helpful in this situation. Palliative care services are experts at being sure the right medications are being used to provide comfort and awareness, coordinating family meetings, and discussing prognosis. They can also assist in weighing the benefits or risks of a life supporting therapy such as going on a ventilator or dialysis. Having an advanced directive that designates a surrogate decision maker is important but many do not have one when a crisis occurs.

Palliative care is not associated with any specific length of life or prognosis. In other words, palliative care is not always end of life care. We have a great program for end of life care, called hospice. When a person has a median life expectancy of six months they become eligible for the Medicare Hospice Benefit (if enrolled in Medicare). Another way to understand the difference is: all hospice care is palliative in nature but not all palliative care is hospice. People can benefit from palliative care at any stage of their disease process. Palliative care is not associated with any specific length of life or prognosis. In other words, palliative care is not always end of life care. We have a great program for end of life care, called hospice. When a person has a median life expectancy of six months they become eligible for the Medicare Hospice Benefit (if enrolled in Medicare). Another way to understand the difference is: all hospice care is palliative in nature but not all palliative care is hospice. People can benefit from palliative care at any stage of their disease process.

Palliative care is a specialty that provides multidisciplinary expertise in symptom management, establishing a prognosis, assisting patients and families in setting goals of care, and helping patients make decisions about the benefits or risks of burdensome life supporting therapies. Most large hospitals and cancer centers now have palliative care consultation services available. There are also growing numbers of outpatient palliative care clinics. The most common reason to consult a palliative care expert is to control a difficult symptom such as pain, shortness of breath, constipation, anxiety, or depression. Palliative care is a specialty that provides multidisciplinary expertise in symptom management, establishing a prognosis, assisting patients and families in setting goals of care, and helping patients make decisions about the benefits or risks of burdensome life supporting therapies. Most large hospitals and cancer centers now have palliative care consultation services available. There are also growing numbers of outpatient palliative care clinics. The most common reason to consult a palliative care expert is to control a difficult symptom such as pain, shortness of breath, constipation, anxiety, or depression.

Cancer care should be evidenced based, integrated with palliative care, and be the model for patient-family centered care. Cancer not only affects the individual but also the family. Studies have shown that when palliative care is introduced at an earlier time in the care of lung cancer, the patients with palliative care as well as their usual oncology care have better quality outcomes and live longer than those without a palliative care provider. I am sure this intervention would also apply to many other types of cancer. So the best way to improve quality and reduce spending is the integration of oncology, primary, and palliative care. Cancer care should be evidenced based, integrated with palliative care, and be the model for patient-family centered care. Cancer not only affects the individual but also the family. Studies have shown that when palliative care is introduced at an earlier time in the care of lung cancer, the patients with palliative care as well as their usual oncology care have better quality outcomes and live longer than those without a palliative care provider. I am sure this intervention would also apply to many other types of cancer. So the best way to improve quality and reduce spending is the integration of oncology, primary, and palliative care.

There have been amazing advances in how we manage most cancers over the past twenty years. People who would have had a very limited life expectancy in the past now are living for many years, even with later stages of cancer. We have also developed technologies that carry a heavy burden at the end of life. We can keep people alive on a variety of “machines” without really adding to their meaningful life. Many patients tell me “I want everything done to stay alive”. That is very understandable; however it must be balanced with a discussion of the other things that are important to them. Advanced directives are a way to have that discussion and avoid unnecessary suffering for patients and families. There have been amazing advances in how we manage most cancers over the past twenty years. People who would have had a very limited life expectancy in the past now are living for many years, even with later stages of cancer. We have also developed technologies that carry a heavy burden at the end of life. We can keep people alive on a variety of “machines” without really adding to their meaningful life. Many patients tell me “I want everything done to stay alive”. That is very understandable; however it must be balanced with a discussion of the other things that are important to them. Advanced directives are a way to have that discussion and avoid unnecessary suffering for patients and families.

Thank you for your question. I do not know that there is anything that is specifically defined as ‘palliative care counseling’ or that would necessarily be qualitatively distinct about this work. However, counseling or various modes of supportive psychotherapy with patients who are dealing with psychological issues related to facing a serious life-threatening illness is a crucial need, is likely underutilized and underprovided, but is essential to good quality palliative care which ought to be multidimensional and multidisciplinary in approach in order to achieve its mission of addressing emotional concerns, social stressors, as well spiritual matters and physical symptoms, all of which are often encountered, and in a very different way than may have been experienced in the past. By and large, these broad issues constitute indications for involving mental health practitioners to offer support when providing palliative care. Indeed, then, it would seem that most people would benefit from such counseling in the context of palliative care to receive emotional support for addressing these matters. These issues are part of the general indications for psychotherapeutic work which is to improve coping and adaptive functioning by gaining a better understanding of anxieties and inhibitions with respect to one’s self and one’s role in the context of life changes. However, like any other area or focus, there are certainly specific themes that uniquely emerge when dealing with such issues, and resultant depressive and anxiety symptoms, for instance, in the palliative care setting. End of life, itself, may be conceived as a phase of development with unique conflicts and challenges, and, indeed, may subsume a period of tremendous growth, particularly when these are satisfactorily addressed. Unique issues most salient during this time are even such that a corresponding framework from which to understand and address them has been established – Existential concerns and psychotherapy, respectively. Indeed, these issues are so universal that they are conceived to apply on some level to anxieties and fears faced at many points in life, and not just at its end when, however, they perhaps most readily and directly apply. These concerns may be subsumed in the domains of “the self”, “free choice”, “meaning”, and “anxiety”. Some major topics distinctly encountered in the approach to the palliative care patient for psychological support include dealing with demoralization, or a loss of meaning, and with lack of dignity. To address such issues, certain psychotherapeutic methods have been established, including the general application of interpersonal psychotherapy, or modified psychodynamic therapy, and various types of existential psychotherapy, such as meaning-centered psychotherapy, as well as dignity therapy. Thank you for your question. I do not know that there is anything that is specifically defined as ‘palliative care counseling’ or that would necessarily be qualitatively distinct about this work. However, counseling or various modes of supportive psychotherapy with patients who are dealing with psychological issues related to facing a serious life-threatening illness is a crucial need, is likely underutilized and underprovided, but is essential to good quality palliative care which ought to be multidimensional and multidisciplinary in approach in order to achieve its mission of addressing emotional concerns, social stressors, as well spiritual matters and physical symptoms, all of which are often encountered, and in a very different way than may have been experienced in the past. By and large, these broad issues constitute indications for involving mental health practitioners to offer support when providing palliative care. Indeed, then, it would seem that most people would benefit from such counseling in the context of palliative care to receive emotional support for addressing these matters. These issues are part of the general indications for psychotherapeutic work which is to improve coping and adaptive functioning by gaining a better understanding of anxieties and inhibitions with respect to one’s self and one’s role in the context of life changes. However, like any other area or focus, there are certainly specific themes that uniquely emerge when dealing with such issues, and resultant depressive and anxiety symptoms, for instance, in the palliative care setting. End of life, itself, may be conceived as a phase of development with unique conflicts and challenges, and, indeed, may subsume a period of tremendous growth, particularly when these are satisfactorily addressed. Unique issues most salient during this time are even such that a corresponding framework from which to understand and address them has been established – Existential concerns and psychotherapy, respectively. Indeed, these issues are so universal that they are conceived to apply on some level to anxieties and fears faced at many points in life, and not just at its end when, however, they perhaps most readily and directly apply. These concerns may be subsumed in the domains of “the self”, “free choice”, “meaning”, and “anxiety”. Some major topics distinctly encountered in the approach to the palliative care patient for psychological support include dealing with demoralization, or a loss of meaning, and with lack of dignity. To address such issues, certain psychotherapeutic methods have been established, including the general application of interpersonal psychotherapy, or modified psychodynamic therapy, and various types of existential psychotherapy, such as meaning-centered psychotherapy, as well as dignity therapy.

Palliative Care Psychiatry, or as I call it, Palliative Psychiatry, is not a formal field, per se, though Psychiatry in Palliative Medicine is a growing area of study and practice. ‘

The most commonly and officially cited definition of Palliative Care is that put forth by the World Health Organization (WHO): “an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.” Of course, you will note psychosocial issues are subsumed therein.

Indeed, the modern Hospice Movement, from which Palliative Care emerged and in which, in its current realization within the U.S., Palliative Care is practiced, is largely seen as coming from the field of nursing as its founder, Dame Cicely Saunders, is largely recognized as a nurse, though she also became a social worker and, eventually, a physician. Indeed, much of the practice of interdisciplinary treatment conducted in the palliative care and hospice setting stems from the tradition of such practice that has existed within Psychiatry. Palliative Care practioners, in the same way that has historically been the case for Psychiatric consultants, have come to often be called upon to by overwhelmed medical providers to help deal with complex psychosocial issues which are difficult to face without such further support. As such, the field of Palliative Care has much to learn from the vast literature within Psychiatry and, specifically, its own subspecialty of Psychosomatic Medicne or Consultation-Liaison Psychiatry, in addressing these issues and the charged dynamics that may exist between patient, family, and provider in such circumstances of heightened and multifaceted distress.

Palliative Care as a formal medical subspecialty is called Hospice and Palliative Medicine, and probably subsumes the most potentially broad area, as such, in medicine (amongst the American Board of Medical Subspecialties), allowing physicians within 10 different specialty medical boards – Internal Medicine (not to mention all of its core subspecialties) Family Medicine, Anesthesiology, Emergency Medicine, Obstetrics and Gynecology, Pediatrics, Physical Medicine and Rehabilitation, Psychiatry, Neurology, Radiology, and Surgery – to pursue training in the field, not to mention the various other fields of medical care which have specialty-level Palliative Care education, including Nursing, Social Work, and Psychology.. A major factor in this, as I understand it, is that Palliative Care is as much a philosophy and approach to medical practice, as it is a distinct subspecialty, as evidenced by a major mission in the field being education. I mention this further to point out that Psychiatry is subsumed within this. One might think twice about some of these areas, though on quick consideration a clear rationale for involvement is evident. Palliative Care in Emergency Medicine is an area of huge import, even from a public health perspective, and is an active and flourishing area of study at present. Radiology includes interventional techniques which may address burdensome symptoms such as pain with minimal invasiveness. Surgery, likewise, can be conducted for palliative indications, again an area of important consideration. Anesthesiology, PM&R, and Neurology are all involved in pain management, for one. Internal Medicine may be most obvious, including, in particular, the subspecialty fields of Geriatrics and Oncology. Psychiatry takes on substantial focus, apart from the others, and does potentially subsume an entirely independent area of work if only for its relative lack of recognition, particularly with respect to the magnitude of its importance.

In the defining text on the topic now approaching its 3rd Edition, – the Handbook of Palliative Care in Psychiatry, the authors, William Breitbart and Harry Max Chochinov, refer to the evolving field as Psychiatric (or Psychosocial) Palliative Care and note that the last decade has seen an “all-encompassing multidisciplinary approach to care for the dying beginning to take hold” in palliative care which had heretofore been predominantly focused on somatic issues, overshadowing focus on psychological, existential, and spiritual issues at the end of life. How could it not? The universal issues facing people approaching death – “encountering illness, facing vulnerability, and confronting mortality”– have psychological import. In the Foreword to the 2nd Edition, Kathy Foley writes that, while psychological distress, while common, diagnosable, and treatable, in patients with serious life-limiting illnesses is often under-assessed, undertreated, and sometime stigmatized. She gives examples of potential issues including managing a family’s grief, caring for a dying child, providing pain management for a patient with a substance use disorder, or addressing death and dying in patients with serious or chronic mental illness.

To the extent that palliative care, most broadly defined, is expanding a focus of care to managing the burdensome symptoms related to an illness and its treatment, and their associated distress and burden/ impingement on quality of life, alongside the prospect of pursuing treatment only targeting the disease itself, issues addressed in palliative care by psychiatry generally include the management of psychiatric symptoms – such as the manifestations of delirium (agitation and confusion), depression, or demoralization, or existential despair/ crisis, anxiety/ fear/ nervousness, as well as insomnia, or even fatigue, concentration problems, or lack of appetite– in addition to physical ones like pain (which is only artificially extracted from a psychological underlay) or nausea. Psychiatric palliative care involves a range of interventions beyond psychopharmacologic maneuvers, including individual, group, or even family psychotherapies with supportive and existential approaches as well as bereavement focus, and separate spiritual or pastoral care. Some additional important topics in Palliative Care that fall in the psychiatric realm include Physician Assisted Suicide (only recognized in certain states, specifically Oregon and Washington)/ Euthanasia (prohibited in the U.S.) and desire for hastened death, and providing staff support.

Some well-known psychosocially oriented Palliative Care programs throughout the country include the San Diego Hospice which has an integrated Psychiatry and Palliative Care program, the Psychosocial Oncology program at Dana Farber Cancer Institute in Boston, as well as institutions with which I have been affiliated: the pre-eminent Division at Mount Sinai Hospital in New York where I attended medical school, and Department of Pain Medicine and Palliative Care at Beth Israel Medical Center, where I currently have a dual appointment along with the Psychiatry Department as part of my role serving as Director of Cancer Supportive Services at Continuum Cancer Centers of New York, as well as programs where I trained, including Memorial Sloan-Kettering Cancer Center where the field of Psycho-Oncology was founded in emergence with an early Palliative Care program, and the more recently developed service at Bellevue Hospital Center in New York, an institution well-known for its psychiatric service, where I completed my fellowship in Pain and Palliative Care and my residency in Psychiatry, respectively.

As an addendum, the first program which I mention, the San Diego Hospice, is that which is indicated as being the first of its kind in the country and founded by Dr. Scott Irwin, who is cited in the additional response to this question that I noticed been has helpfully posted. Palliative Care Psychiatry, or as I call it, Palliative Psychiatry, is not a formal field, per se, though Psychiatry in Palliative Medicine is a growing area of study and practice. ‘

The most commonly and officially cited definition of Palliative Care is that put forth by the World Health Organization (WHO): “an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.” Of course, you will note psychosocial issues are subsumed therein.

Indeed, the modern Hospice Movement, from which Palliative Care emerged and in which, in its current realization within the U.S., Palliative Care is practiced, is largely seen as coming from the field of nursing as its founder, Dame Cicely Saunders, is largely recognized as a nurse, though she also became a social worker and, eventually, a physician. Indeed, much of the practice of interdisciplinary treatment conducted in the palliative care and hospice setting stems from the tradition of such practice that has existed within Psychiatry. Palliative Care practioners, in the same way that has historically been the case for Psychiatric consultants, have come to often be called upon to by overwhelmed medical providers to help deal with complex psychosocial issues which are difficult to face without such further support. As such, the field of Palliative Care has much to learn from the vast literature within Psychiatry and, specifically, its own subspecialty of Psychosomatic Medicne or Consultation-Liaison Psychiatry, in addressing these issues and the charged dynamics that may exist between patient, family, and provider in such circumstances of heightened and multifaceted distress.

Palliative Care as a formal medical subspecialty is called Hospice and Palliative Medicine, and probably subsumes the most potentially broad area, as such, in medicine (amongst the American Board of Medical Subspecialties), allowing physicians within 10 different specialty medical boards – Internal Medicine (not to mention all of its core subspecialties) Family Medicine, Anesthesiology, Emergency Medicine, Obstetrics and Gynecology, Pediatrics, Physical Medicine and Rehabilitation, Psychiatry, Neurology, Radiology, and Surgery – to pursue training in the field, not to mention the various other fields of medical care which have specialty-level Palliative Care education, including Nursing, Social Work, and Psychology.. A major factor in this, as I understand it, is that Palliative Care is as much a philosophy and approach to medical practice, as it is a distinct subspecialty, as evidenced by a major mission in the field being education. I mention this further to point out that Psychiatry is subsumed within this. One might think twice about some of these areas, though on quick consideration a clear rationale for involvement is evident. Palliative Care in Emergency Medicine is an area of huge import, even from a public health perspective, and is an active and flourishing area of study at present. Radiology includes interventional techniques which may address burdensome symptoms such as pain with minimal invasiveness. Surgery, likewise, can be conducted for palliative indications, again an area of important consideration. Anesthesiology, PM&R, and Neurology are all involved in pain management, for one. Internal Medicine may be most obvious, including, in particular, the subspecialty fields of Geriatrics and Oncology. Psychiatry takes on substantial focus, apart from the others, and does potentially subsume an entirely independent area of work if only for its relative lack of recognition, particularly with respect to the magnitude of its importance.

In the defining text on the topic now approaching its 3rd Edition, – the Handbook of Palliative Care in Psychiatry, the authors, William Breitbart and Harry Max Chochinov, refer to the evolving field as Psychiatric (or Psychosocial) Palliative Care and note that the last decade has seen an “all-encompassing multidisciplinary approach to care for the dying beginning to take hold” in palliative care which had heretofore been predominantly focused on somatic issues, overshadowing focus on psychological, existential, and spiritual issues at the end of life. How could it not? The universal issues facing people approaching death – “encountering illness, facing vulnerability, and confronting mortality”– have psychological import. In the Foreword to the 2nd Edition, Kathy Foley writes that, while psychological distress, while common, diagnosable, and treatable, in patients with serious life-limiting illnesses is often under-assessed, undertreated, and sometime stigmatized. She gives examples of potential issues including managing a family’s grief, caring for a dying child, providing pain management for a patient with a substance use disorder, or addressing death and dying in patients with serious or chronic mental illness.

To the extent that palliative care, most broadly defined, is expanding a focus of care to managing the burdensome symptoms related to an illness and its treatment, and their associated distress and burden/ impingement on quality of life, alongside the prospect of pursuing treatment only targeting the disease itself, issues addressed in palliative care by psychiatry generally include the management of psychiatric symptoms – such as the manifestations of delirium (agitation and confusion), depression, or demoralization, or existential despair/ crisis, anxiety/ fear/ nervousness, as well as insomnia, or even fatigue, concentration problems, or lack of appetite– in addition to physical ones like pain (which is only artificially extracted from a psychological underlay) or nausea. Psychiatric palliative care involves a range of interventions beyond psychopharmacologic maneuvers, including individual, group, or even family psychotherapies with supportive and existential approaches as well as bereavement focus, and separate spiritual or pastoral care. Some additional important topics in Palliative Care that fall in the psychiatric realm include Physician Assisted Suicide (only recognized in certain states, specifically Oregon and Washington)/ Euthanasia (prohibited in the U.S.) and desire for hastened death, and providing staff support.

Some well-known psychosocially oriented Palliative Care programs throughout the country include the San Diego Hospice which has an integrated Psychiatry and Palliative Care program, the Psychosocial Oncology program at Dana Farber Cancer Institute in Boston, as well as institutions with which I have been affiliated: the pre-eminent Division at Mount Sinai Hospital in New York where I attended medical school, and Department of Pain Medicine and Palliative Care at Beth Israel Medical Center, where I currently have a dual appointment along with the Psychiatry Department as part of my role serving as Director of Cancer Supportive Services at Continuum Cancer Centers of New York, as well as programs where I trained, including Memorial Sloan-Kettering Cancer Center where the field of Psycho-Oncology was founded in emergence with an early Palliative Care program, and the more recently developed service at Bellevue Hospital Center in New York, an institution well-known for its psychiatric service, where I completed my fellowship in Pain and Palliative Care and my residency in Psychiatry, respectively.

As an addendum, the first program which I mention, the San Diego Hospice, is that which is indicated as being the first of its kind in the country and founded by Dr. Scott Irwin, who is cited in the additional response to this question that I noticed been has helpfully posted.

This is an important and common question about a complicated issue that many of us dread -- people with a chronic or advanced illness, clinicians helping patients, and even just as human beings with empathy and fears. It is not my specific area of expertise as I am not a child psychiatrist or a pediatric palliative care specialist, but I have had enough training in both to offer some suggestions.

Books can be helpful, just to have something concrete to provide practical advice and start to give a sense of mastery to an area that most otherwise feel quite at sea. As such, there are plenty out there, depending on the specific situation -- books for parents to help them be able to talk to their children about their illness, or dying, books for children of different ages to deal with a parent's illness or dying or through grief and loss, literature for children who are suffering a chronic or advanced illness, books for the parents of such children, or for bereaved parents, and even material for siblings of sick children.

Mainly having training in Palliative Care and now working in an oncology setting, most of the resources I recommend are related to patients with cancer. That being said, much of the literature out there, I think, is based on this, and some of the resources I can provide in this area also include information that is more generally applied. The following websites are generally very useful for providing all sort of supportive information for people dealing with cancer: www.cancercare.org and www.cancer.net, the sites for CancerCare, an organization devoted to providing supportive care for cancer patients and their families, and oncologist-approved information from the American Society of Clinical Oncology, respectively. Additionally, the American Cancer Society, an organization geared to patients and the general lay public, has very informative information on this subject on its site at the following link: http://www.cancer.org/Treatment/ChildrenandCancer/HelpingChildrenWhenaFamilyMemberHasCancer/DealingWithaParentsTerminalIllness/index . Websites for organizations specifically addressing children whose parents have or have had cancer include www.childrenstreehousefdn.org for Children’s Treehouse Foundation and www.kidskonnected.org for Kids Konnected, the latter of which specifically includes on its resource page a list of books organized by the target audiences I mentioned, as well as on-site information for addressing these matters specifically based on e.g. the age of the child or the issue. Lastly, there is an organization focused on siblings of patients with cancer called SuperSibs, and their website, www.supersibs.org, has a host of useful information.

Some helpful things I tell families struggling with the prospect of having to discuss these matters with their children or agonizing about how to broach the subject are as follows: 1) Talk through your sense of what your child knows or understands. Oftentimes there are clues in their talking or behavior to which parents are attuned in suggesting they might have an inkling that something is wrong, that things are changing, even if it is a heightened curiosity about dad's activities, or whereabouts, or mom's body, or about life, in general. Following through with this can lead to interesting and fruitful conversation both in addressing the topic and for your child's growth. The notion that we all have that kids are smarter than we perceive, and, in some ways, more insightful than ourselves, is something that should be heeded and not overlooked. Not only can it cause distance and breed anxiety, but it has the potential to be a missed opportunity for maturation and connection. If recognized, it can be an open door to a natural, comfortable, and comforting conversation. As difficult as dealing with a parent's illness can be for a child and family, the chance to share these fears or concerns is a welcome one from which all parties can emerge with a positive feeling of competence and safety. 2) Trust what you already know about your children. As much useful advice as you can get from the literature, the most helpful tidbit that you will be told is that you know your kids best. Be with them where you already are with them and go to where they are. Use what you know about them and about what they know.

That being said, I would not presume that your asking for help in this situation at all means that you are out of touch with your child. It is, of course, to be expected that even the most attentive parent would feel overwhelmed and inhibited when faced with this issue, so, for some more direction and encouragement, or even to just have something to grasp, the written word has weight to provide a foundation and sense of traction.

If you search Amazon for any of the books you find through the resources I mentioned, you will find even more interesting and novel approaches to addressing these issues, from activity books to coloring books, etc. After all that, I can tell you that the one book to which I have been referred and recommend to my patients on this matter is called How to Help Children Through a Parent's Serious Illness by Kathleen McCue, MA, CCLS and Ron Bonn.

This is an important and common question about a complicated issue that many of us dread -- people with a chronic or advanced illness, clinicians helping patients, and even just as human beings with empathy and fears. It is not my specific area of expertise as I am not a child psychiatrist or a pediatric palliative care specialist, but I have had enough training in both to offer some suggestions.

Books can be helpful, just to have something concrete to provide practical advice and start to give a sense of mastery to an area that most otherwise feel quite at sea. As such, there are plenty out there, depending on the specific situation -- books for parents to help them be able to talk to their children about their illness, or dying, books for children of different ages to deal with a parent's illness or dying or through grief and loss, literature for children who are suffering a chronic or advanced illness, books for the parents of such children, or for bereaved parents, and even material for siblings of sick children.

Mainly having training in Palliative Care and now working in an oncology setting, most of the resources I recommend are related to patients with cancer. That being said, much of the literature out there, I think, is based on this, and some of the resources I can provide in this area also include information that is more generally applied. The following websites are generally very useful for providing all sort of supportive information for people dealing with cancer: www.cancercare.org and www.cancer.net, the sites for CancerCare, an organization devoted to providing supportive care for cancer patients and their families, and oncologist-approved information from the American Society of Clinical Oncology, respectively. Additionally, the American Cancer Society, an organization geared to patients and the general lay public, has very informative information on this subject on its site at the following link: http://www.cancer.org/Treatment/ChildrenandCancer/HelpingChildrenWhenaFamilyMemberHasCancer/DealingWithaParentsTerminalIllness/index . Websites for organizations specifically addressing children whose parents have or have had cancer include www.childrenstreehousefdn.org for Children’s Treehouse Foundation and www.kidskonnected.org for Kids Konnected, the latter of which specifically includes on its resource page a list of books organized by the target audiences I mentioned, as well as on-site information for addressing these matters specifically based on e.g. the age of the child or the issue. Lastly, there is an organization focused on siblings of patients with cancer called SuperSibs, and their website, www.supersibs.org, has a host of useful information.

Some helpful things I tell families struggling with the prospect of having to discuss these matters with their children or agonizing about how to broach the subject are as follows: 1) Talk through your sense of what your child knows or understands. Oftentimes there are clues in their talking or behavior to which parents are attuned in suggesting they might have an inkling that something is wrong, that things are changing, even if it is a heightened curiosity about dad's activities, or whereabouts, or mom's body, or about life, in general. Following through with this can lead to interesting and fruitful conversation both in addressing the topic and for your child's growth. The notion that we all have that kids are smarter than we perceive, and, in some ways, more insightful than ourselves, is something that should be heeded and not overlooked. Not only can it cause distance and breed anxiety, but it has the potential to be a missed opportunity for maturation and connection. If recognized, it can be an open door to a natural, comfortable, and comforting conversation. As difficult as dealing with a parent's illness can be for a child and family, the chance to share these fears or concerns is a welcome one from which all parties can emerge with a positive feeling of competence and safety. 2) Trust what you already know about your children. As much useful advice as you can get from the literature, the most helpful tidbit that you will be told is that you know your kids best. Be with them where you already are with them and go to where they are. Use what you know about them and about what they know.

That being said, I would not presume that your asking for help in this situation at all means that you are out of touch with your child. It is, of course, to be expected that even the most attentive parent would feel overwhelmed and inhibited when faced with this issue, so, for some more direction and encouragement, or even to just have something to grasp, the written word has weight to provide a foundation and sense of traction.

If you search Amazon for any of the books you find through the resources I mentioned, you will find even more interesting and novel approaches to addressing these issues, from activity books to coloring books, etc. After all that, I can tell you that the one book to which I have been referred and recommend to my patients on this matter is called How to Help Children Through a Parent's Serious Illness by Kathleen McCue, MA, CCLS and Ron Bonn.

Quality of life has to be our goal in managing palliative chemotherapy Quality of life has to be our goal in managing palliative chemotherapy

Palliative care refers to treatments that improve quality of life at any stage of a life-threatening illness. Palliative care relieves pain, eases breathing difficulties and treats emotional symptoms.

For more about hospice, see our article: http://www.cfah.org/hbns/preparedpatient/Vol4/Prepared-Patient-Vol4-Issue3.cfm
Palliative care refers to treatments that improve quality of life at any stage of a life-threatening illness. Palliative care relieves pain, eases breathing difficulties and treats emotional symptoms.

For more about hospice, see our article: http://www.cfah.org/hbns/preparedpatient/Vol4/Prepared-Patient-Vol4-Issue3.cfm

Palliative care, or care that improves quality of life, can be a part of hospice care, but it can also take place outside of hospice care. Hospice specifically refers to end-of-life care.

For more about hospice, see our article: http://www.cfah.org/hbns/preparedpatient/Vol4/Prepared-Patient-Vol4-Issue3.cfm

Palliative care, or care that improves quality of life, can be a part of hospice care, but it can also take place outside of hospice care. Hospice specifically refers to end-of-life care.

For more about hospice, see our article: http://www.cfah.org/hbns/preparedpatient/Vol4/Prepared-Patient-Vol4-Issue3.cfm