The Healing Impact of Palliative Care Gerontology

Submitted by Sallie Guthrie, RN

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The Healing Impact of Palliative Care Gerontology

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Palliative care, the phrase associated with terminal illness and death, the choice when all hope is gone. Physicians and nurses often treat this option of care with distaste and suspicion, as if palliative care is the same as an execution order. The reality is palliative care is a philosophy and treatment to give an improved quality of life to those near the end of life and those with life-limiting conditions. Our society is removed from the natural process of death; it is feared, a foe to be beaten by technology for if a patient dies it is because medicine failed. So the question remains, is death and dying unnatural, do we stop treatment and abandon patients because we can’t cure them? No, it is time to understand and incorporate the truth and value of palliative care into our healthcare and treatment of patients. It is vital that healthcare professionals are educated about what palliative care can do for this increasing group of patients.

The Healing Impact of Palliative Care 

“America is in a state of crisis regarding the manner in which we care for people who are dying. Study after study documents that medical care for the dying is poorly planned and frequently ignores the treatment preferences of the patient and family. Pain is a commonly under-treated -- or not even addressed -- even within our most prestigious teaching institutions. Too often, and with no mal-intent on the part of the doctors or nurses, medical treatment directed at prolonging the patient's life ends up contributing to their pain, isolation, and suffering. As if all that were not bad enough, the current "non-system" of American health care routinely pauperizes people for being seriously ill and not dying quickly enough! Added to the worries of illness, patients worry that in continuing to live they will consume their life's savings and then bankrupt their family; and sometimes they are right. Too many American families are shaken with financial devastation heaped on top of the emotional grief of losing a member. Suffering among the dying in America is pervasive, and so much of it is unnecessary.” (Byock 1997)

Ira Byock is a physician who is best-known for developing the concept of palliative and hospice standards of care. His personal experience with his father’s terminal illness allowed him the opportunity to become intimately familiar with the needs of dying patients. The above quote is an accurate depiction of end of life care in Western medicine and culture. As the patient population ages, there is a greater need for treatment options for life-limiting conditions and end of life care other than giving up. Palliative care is the best option to meet the needs of these patients and their families.

It is essential to define what palliative care is and expose misleading concepts about it. Most importantly, palliative care is not physician assisted suicide. Ira Byock says it best, “Approaching the problem of suffering among the dying through the lens of assisted-suicide is like looking through the wrong end of binoculars; it narrows and distorts the view. My focus is in reducing the conditions that make PAS seem an attractive alternative to patients facing the prospect of living with an incurable illness and to society struggling to care for the dying. Success will not come with making assisted suicide and euthanasia legal, but rather with making them unnecessary. As a doctor my commitment is to do everything possible -- and anything that is necessary -- to alleviate a person's suffering. In the very rare situations in which physical distress is extreme it is always possible to provide comfort through sedation.

The difference between what I do and euthanasia is that palliative care does whatever is necessary to alleviate the suffering while euthanasia is focused on eliminating the sufferer. Those among us who think we would want physician-assisted suicide if we were sick, should ask ourselves whether that is also what we would want for our lover or sister or child who was incurably ill. Would we want them to die quickly, so that they would not become a burden to us? If not, we need to look deeply into what "success" would look like in this time of living we call dying.” (Byock 1997)

“Palliative care is the care of patients suffering from a variety of illnesses whose diagnosis is limited. Its focus is intensive physical and psychospiritual care, including planning for the support of family members after death. Because of its complexity and intensity such care is best delivered by an interdisciplinary team.” (Latimer 1989) The purpose of palliative care is to treat the symptoms and needs of the patient and family/caregivers to allow the patient to have an improved quality of life, irrespective of how long that may be. Comfort measures are a part of this care which involve treating and controlling symptoms that are a part of a life-limiting disease. The current patient population is presenting healthcare professionals with more complex issues than seen in previous generations. Technology has allowed patients with COPD, heart disease, diabetes and related conditions to live longer with treatment; however, an extended longevity may not always be the best course of action. All too often elderly patients have their life functions extended by technological means; a ventilator breathing for them, drugs keeping the heart beating, enteral nutrition, a foley catheter to drain the bladder…the list can go on indefinitely. Their families camp out in the ICU waiting room, going in at the appointed visiting times and usually just sitting there, watching and occasionally speaking in hushed tones, listening to the monitors, IV pumps and the whoosh of the vent as it moves air in and out. The patient is attached to wires and lines, sometimes restraints, never moving or uttering a sound. The patient may or may not have adequate pain relief and sedation to keep them comfortable during this therapy, it is up to doctors and nurses to decide. For a fortunate few, when death comes they have someone there, often it is the nurse; but, for the vast majority they die alone with a monitor recording a slowing heart that becomes a flat line. Family is called, tubes and lines removed so a brief look can be had and the mortician is called for a pick up. For the majority of people, this is how their life will end; a cold, mechanical process that dehumanizes the dying individual, removing emotional and personal aspects; comparable to turning off the lights.

How can a society which thinks of itself as the most advanced in the world allow this to happen? Do physicians and nurses lose their ethical perspective once a patient becomes incurable? Have they put aside nonmaleficence and justice when death becomes a factor? “Healthcare professionals are sometimes reluctant to diagnose dying, as they have not been trained to care for dying patients and therefore feel helpless.” (Ellershaw 2003) “Ensuring a good death for all is therefore a major challenge not only for healthcare professionals but also for society.” (Ellershaw 2003) Educating healthcare professionals on end of life care and life limiting conditions is key to changing how Western society treats the needs of incurable patients and their families.

In order to incorporate new standards of care and practices, the financial impact must be evaluated. Research is demonstrating that early intervention and use of palliative care “reduces direct costs for both hospital and payers.” (Fine 2004) A sad fact is “that more than half of the elderly population has an income of <$20,000 and spends >25% of it on health care.” (Fine 2004) In addition to the increasing cost; consumers, insurance and healthcare are beginning to consider if available resources, technically and financially, are being used efficiently. “Spending more money does not necessarily lead to improved results. Researchers at Dartmouth Medical School demonstrated that some regions of the country spend 1.6 times more money per Medicare patient than other pars of the country, yet the increased spending does not lead to better quality of life or longer life.” (Fine 2004) East Tennessee and Appalachia fit into this category due to the high level of poverty, lack of healthcare access and a population with a high number of risk factors. Another study, Clinical and Economic Impact of Palliative Care Consultation, followed 304 patients (n = 1,813) who received palliative care consultations and care and compared the cost of treatment to standard care practices. “Compared to matched controls without palliative care consultation, palliative care cases had lower cost per day ($897 vs. $1004, P = 0.03). Per diem variable costs were 10.7% less for all palliative care cases and 20.5% less for those with >50% hospital days with palliative care consultation. Palliative care consultation is followed by decisions to forego costly treatment and improved symptom scores, and earlier palliative care intervention results in greater cost-savings.” (Hanson 2006) Obviously, eliminating unnecessary tests and treatments will drastically reduce the cost of care and allocation of resources.

Knowing when to start palliative treatment is a significant factor to ensure an appropriate plan of care that provides the most benefits to both patient and cost. The Palliative Performance Scale (PPS) provides a guide to meaningful survival estimates thus allowing the palliative care team to create a course that will meet the needs of the patient from time of admission to death. Palliative care works best when begun at a diagnosis of the patient having approximately two years life expectancy. Allowing the palliative care team to evaluate and plan enables the best use of resources for patient and healthcare. The PPS is “a modification of the Karnofsky Performance Scale which measured five functional dimensions: ambulation, activity level and evidence of disease, self-care, oral intake and level of consciousness. The PPS is divided into 11 levels, from PPS 0% to PPS 100%, in 10% increments - a patient at PPS 0% is dead and at 100% is ambulatory and healthy.” (Lau 2009) It is designed to give an estimate of survival time and is subject to change constantly due to variables that occur in reality. As a tool, it is useful for healthcare professionals to have a better idea of when to initiate palliative care. “In the meta-analysis by Downing et al. on the survival patterns of 1808 patients from four independent studies, the PPS was confirmed as a strong predictor of survival for palliative care patients; higher PPS levels were associated with increased lengths of survival.” (Lau 2009) “…the study also identified the value of providing survival probabilities and lengths of survival in a way to assist clinicians in meaningful communication with patients and families.” (Lau 2009) Using the PPS and related tools to help healthcare professionals realize when palliative care is the best option for their patient would assist with beginning a palliative plan of care early. This would use the available resources more suitably for the needs of the patient and family. Early intervention also gives the family more time to adjust to a terminal diagnosis and complete tasks related to the eventual death of the patient. The palliative care team uses spiritual, psychological counseling and social workers to decrease the stress level for patient and family.

Once a patient begins to be cared for by palliative care does all other treatment stop, is pain medication the only treatment? This is a misconception that keeps patients and healthcare professionals from using palliative care. Palliative care is defined by the World Health Organization as “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.” (Kuziemsky 2007) Improving the quality of life means controlling the symptoms and pain associated with the patient’s condition. For example, the later stages of COPD causes a form of dyspnea referred to as air hunger, the terrible sensation of not getting enough air with each breath. Using low doses of morphine can relieve this symptom; however, most physicians and nurses are not educated as to opioid use for this purpose. In fact, one will often hear that the opioid will depress the respiratory drive and stop breathing. The truth is that “…Opioids are very effective in relieving dyspnea, although the exact mechanism is not understood. Contrary to common belief, this effect does not result through inhibition of respiratory drive. Relief from the “work of breathing” is a function of steady-state opioid levels, much like steady-state opioid levels relieve pain. Inhibition of respiratory drive results primarily from rising opioid serum levels. Studies have demonstrated significant relief of dyspnea from opioids without significant effects on ventilation or pCO2 levels in common therapeutic doses. Having said this, patients with dyspnea are fragile. Respiratory drive suppression can occur if serum opioid levels rise rapidly. Thus, when initiating therapy with opioids for dyspnea, one should start with a low dose and raise the dose slowly as needed” (Hallanbeck 2003).

The pharmacology of palliative care is a creative and inventive science; often it benefits from necessity and discovers new uses for old drugs. The B.A.D. drip, for example, is an unlikely remedy for unresponsive nausea. It is Benadryl™, an antihistamine; Ativan™, a sedative and Decadron™, a cortisteroid. Individually each drug has no indications to use for nausea, but mixed together in a solution that is given intravenously over 24 hours at rate of 1 to 3 ml/hour and it eases nausea. Patients with end stage congestive heart failure (CHF) find that even small fluid weight gain can produce exhaustive dyspnea; using combinations of diuretics and doses based on daily weight gain can lessen the energy demand needed to breathe. End stage and dying patients have different physical tolerances to medication than the rest of the population. The disease process killing them can increase the amount of analgesic to control pain to exceptionally high levels; due to a combination of increased pain receptors and failing systems. The needs of these patients must be evaluated and treated in the sphere of palliative standards, with the goal being that the symptoms are controlled and/or relieved. Understanding that for palliative patients, an improved quality of the lifespan left to that person is the goal. Even a dying person can experience the healing impact of palliative care.

How can this healing impact become a more prominent part of healthcare? Who should be educated first on how to take care of this patient population? Nurses. “Studies indicate that nurses spend more time with patients at the end of life than any other health care discipline (K. M. Foley & Gelband, 2003). So it is imperative that nurses be educated so they can provide this high-quality end of life care (Wallace 2009). Both novice and experienced nurses often do not feel competent or confident in caring for dying patients. End of life care can be challenging in the best of circumstances, a nightmare in its worst. Nursing educators, in schools and in the field, have a responsibility to educate nurses about end of life care. Knowledge will give to nurses the ability to better understand this difficult part of nursing and hopefully the competence to maintain the continuum of care. Nurses can also extend this education to patient’s families and to other healthcare workers including physicians. Teaching is a vital and dynamic part of nursing, it can change and improve patient outcomes, even at the end of life. For the patient, a nurse who understands the process of dying, offers comfort and care that makes the time left easier. Small things, such as good oral care, smoothing out wrinkles in the sheets, or just quietly holding their hand are eloquent, gentle nursing care. The confidence that the nurse possesses can decrease the stress for the family. Nurses are the liaison between the staff, physician and family. “Research suggests that seriously ill, hospitalized patients and their families want alleviation of physical distress, some control over their health care decisions, prevention of death-prolonging procedures, improvement in familial relationships, and reduction in caregiver burden.” (Gelfman 2007) Again, the importance of the nurse’s interaction with patient and family is critical. Since the nurse spends more time with the patient, she can assess and utilize the resources offered by a palliative care team. “…palliative care programs reduce symptom distress, improve patient and family satisfaction, and reduce hospital length of stay, costs, and utilization.” (Gelfman 2007) Data from studies suggest “that people dying in institutions have unmet needs for symptom amelioration, physician communication, emotional support and treatment perceived as respectful.” (Gelfman 2007) Families who witness their loved ones in serious distress often suffer psychiatric illnesses and functional impairments. “Additionally, Azoulay et al. fount that post-traumatic stress reaction was common in family members of ICU patients.” (Gelfman 2007) If hospitals are to be a place of healing, then the quality of care cannot end when the patient becomes incurable and is dying. Nurses must be competent and comfortable performing quality end of life care, not just for the benefit of the patient and family, but for themselves.

“In approaching this paradox it is necessary to restate the most fundamental tenet of the hospice or palliative approach to care: Dying is a part of living. The period of time referred to as dying can, therefore, be considered as a stage in the life of the individual person and the family. Modern psychological theorists, among them Erik Erickson, Jean Piaget and Abraham Maslow, whose work collectively forms the basis of modern behavioral medicine, all asserted that human development is a life-long process.

There is a tendency within contemporary culture and reflected in medical practice to assume that on receipt of a terminal diagnosis meaningful life has ended. Within this perspective the person is constrained to wait for death, being reduced to hope only for some measure of comfort and to avoid being a burden to others. This attitude is incongruous with the basic philosophy of modern palliative care for it inappropriately devalues and separates this last stage of living from the continuum of a person's life.

It is useful to conceptualize dying as a stage of the human life-cycle, comparable to infancy, childhood, adolescent, adulthood and advanced age. While individuality, of course, extends through the very end of life, characteristic challenges, or developmental landmarks, can be discerned and representative task work toward achievement of these goals can be identified.” (Byrock 1996)

Healing is defined as: to cause (an undesirable condition) to be overcome (Merriam-Webster online dictionary). Impact is defined as: a measure of the tangible and intangible effects (consequences) of one’s things or entity’s actions or influence on another (Business Dictionary.com). A healing impact on healthcare is the goal of palliative care. We are born, live and we die, this cycle will never change. Healthcare can no longer ignore and push aside the final chapter of human life, it must turn and face the challenge of responding to the needs of the population, especially the aging population. Leonard Di Vinci said, “As a well-spent day brings happy sleep, so a life well spent brings happy death.” As a society, as healthcare professionals, as sentient beings, we are obligated to meet the needs of those who are at the end of their life with the healing impact of palliative care.

References

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