Module 1: Transitioning to Hospice and Palliative Care

1. Module 1: Transitioning to Hospice and Palliative Care Instructor Jennifer Hale, RN BS CHPN Georgia Hospice and Palliative Care Organization Unit 7: End of Life Care

2. What is “End of Life” Care? • There is no actual definition of “End of Life” care – it is simply an umbrella for all of the needs patients and families have and the services designed to meet them when time is of the essence

3. Objectives • Define “End of Life” • Distinguish between hospice and palliative care • Identify who is eligible for specified End of Life care • Cite the boundaries between curative, palliative and hospice care • Identify grief, loss and bereavement responses in healthcare professionals For technical issues, please contact 404-969-0387 or email support@healthtecdl.org

4. Yes, but what does that mean? • According to the National Institute of Health (NIH), there are several components of “End of Life” • The presence of a chronic disease or symptom or functional impairment that persists and may fluctuate • The symptom or impairment that results from the underlying disease requires formal (paid) or informal (unpaid) care and can lead to death

5. Continued… • NIH also says the following: • “Life is a continuum and individuals traverse this continuum facing illnesses and limited functionality. Evidence does not support defining end of life as crossing some arbitrary threshold. The end of life process includes numerous transitions: physical, emotional, spiritual and financial.”

6. In short… • End of life care is the formal and informal care required to meet the needs of the patient and family during the physical, emotional, spiritual and financial transition from living to dying related to an underlying disease process or illness.

7. Who can and should receive End of Life care? • End of Life care can be separated into two categories and understanding the differences will help to define who is eligible for which types of services. • Palliative Care • Hospice Care

8. Palliative Care • To Palliate: (verb) to mitigate, to alleviate, to lessen pain, to give temporary relief (Oxford Dictionary) • Palliative Care: the active, total care of patients whose disease is not responsive to curative treatment. Control of pain and other symptoms and mediation of psychological, social and spiritual problems is paramount. (World Health Organization)

9. Palliative Care • Palliative care is total care – body, mind and spirit • Palliative care grew out of hospice care • Palliative care is not restricted to a specific time frame or patient population and is becoming more prevalent in Western medicine

10. Palliative care • Often only found in limited settings such as hospitals or in specific commercial insurance segments • Interdisciplinary approach • Rarely home care or community based • Not restricted to end of life – palliative care is for any situation in which a patient may suffer

11. Hospice care • Term can be traced back to medieval times when a hospice was a place travelers could stop for rest, recuperation and care on a long journey • Modern hospice concept came into being in 1967, created by Dame Cicely Saunders – a physician in London who founded St. Christopher’s hospice and implemented the interdisciplinary approach that is the cornerstone of hospice today

12. Hospice care • The Medicare Hospice Benefit (MHB) was established in 1982. As a condition for being a reimbursed benefit for Medicare, federal Conditions of Participation were written and many states developed regulations as well. • This regulatory oversight standardized care delivery but also restricted hospice care to specific criteria of eligibility

13. Hospice care eligibility • 2 physicians must certify that the patient is expected to live less than six months if the disease continues its normal course, given that prognostication is not an exact science (best, educated guess) • Patient (or representative) desires to have hospice care (curative treatment is no longer the focus)

14. Palliative Care vs. Hospice • They are the same TYPE of care • Palliative care is not funded specifically, is usually found within an existing system • Hospice is specifically reimbursed so is regulated and is often provided by an agency or as a separate service within a system • Hospice is defined as care for “terminally” ill patients • Palliative care removes the mandate for “terminal” care, making it available to any patient at any time for the relief of symptoms or management of chronic disease

15. How does Eligibility work? • As identified earlier, hospice care can be obtained for patients who are certified as “terminal” and who want to have hospice care • Deciding who is terminal is the tricky part for clinicians • Medicare recognized this as a barrier to access and so gave us some guidelines for making better “guesses”

16. Eligibility for Hospice • Curative Care – bioethical care focused on curing disease; involves a variety of medical consultants and special therapies • Hospice philosophy states that patients who elect this benefit must understand and agree that they are no longer pursuing curative care

17. Eligibility for Hospice • Patient does not have to “give up” anything – only the focus of care changes • Radiation treatment for relieving pain or shortness of breath • IV fluids for short term relief of symptoms of dehydration related to intractable nausea and vomiting • A patient in hospice for Cardiac disease may still receive dialysis to manage the symptoms of fluid overload or to manage another disease process entirely (such as renal failure)

18. Eligibility for Hospice • If the goal of the therapy is not to prolong the life of the patient but to relieve or manage a symptom until the patient dies naturally, then it is most likely palliative in nature • Ask “Would I be surprised if this patient died within the next six months?” – if not, then is probably eligible.

19. Eligibility for Hospice • Patients with acute or chronic disease processes may qualify for hospice if they have reached a point in their disease trajectory where the burdens of treatment outweigh the benefits or the patient is expected to die in less then six months despite aggressive curative treatment

20. Cancer and Hospice • Patients with end stage cancer typically display the following characteristics: • Significant weight loss, unable to gain weight • Symptoms associated with progressive disease including nausea/vomiting, pain, shortness of breath, cachexia and anorexia • Decline in functional status • Metastasis to one or more areas • Lab values or imaging that support progressive disease state

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22. Dementia and Hospice • Patients with end stage dementia usually display the following characteristics: • Functional decline and dependence for most ADLs (unable to ambulate unassisted, unable to feed themselves, incontinent of both bowel and bladder, unable to perform personal care) • Speech is limited to 6 words or less in the course of normal conversation – whether they make sense in context is inconsequential • Presence of AT LEAST ONE precipitating factor: • Decubitus ulcers of severe degree - pneumonia • Septicemia - aspiration - weight loss (10%)

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24. Pulmonary Disease and Hospice • A: Severe lung disease documented by disabling dyspnea at rest AND poor response to bronchodilators • B: Hypoxemia at rest on room air with pO2 <55mmHg or O2 sat of <89% on supplemental O2 • A&B must be present

25. Forced Expiratory Volume in 1 second (FEV1) <30% of predicted Progressive disease evidenced by increased visits to MD or ER and hospitalizations Hypercapnia with pCO2 >50mmHg Unintentional weight loss of >10% Resting tachycardia >100bpm Cor Pulmonale due to advanced pulmonary disease Pulmonary Disease – Supporting Documentation

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27. Cardiac Disease and Hospice • A: Pt is already optimally treated with diuretics and vasodilators • B: Pt has significant symptoms of recurrent congestive heart failure (CHF) at rest or with minimal exertion as defined by the New York Heart Association (NYHA) Class IV • A & B must be present

28. Ejection Fraction <20% Persistent symptoms of CHF Not a candidate for invasive procedures including transplant Symptomatic arrhythmias resistant to therapies Hx of cardiac arrest Syncope of any cause Cardiogenic brain embolism Concomitant HIV disease Cardiac Disease – Supportive Documentation

29. Liver Disease and Hospice • 1. Patient should have either INR >1.5 or PT > 5 seconds over control • 2. Serum albumin < 2.5gm/dl • 3. Ascites, Hepatic Encephalopathy, recurrent variceal bleeding despite intensive therapy, spontaneous bacterial peritonitis • 1&2 must be present, 3 is helpful for determining end-stage process

30. Progressive malnutrition Muscle wasting with ↓ strength and endurance Continued active alcoholism Hepatitis B positive Hepatitis C refractory to treatment with interferon Hepatocellular carcinoma Liver Disease – Supporting Documentation

31. Stroke and Hospice • Acute or Chronic phase • Pt must have decreased functional capacity requiring extensive assist with ADLs, non-ambulatory and decreased PO intake • Poor nutritional status evidenced by • >10 % weight loss over past 6 months • >7.5% weight loss over past 3 months • Serum albumin < 2.5gm/dl • Current hx of aspiration pneumonia

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33. Exceptions • Patients with pulmonary disease as the hospice diagnosis cannot elect mechanical ventilation and receive hospice care – Medicare considers ventilation a life-prolonging treatment directly related to pulmonary disease • Patients with end-stage renal disease as the hospice diagnosis cannot elect to continue dialysis for the same reasoning – Medicare considers dialysis a life-prolonging treatment directly related to renal failure

34. Transitioning from Curative to Palliative Care • Is the patient eligible? • Will the patient receive care that supports his/her personal, cultural and spiritual philosophies? • Does the patient express a desire to die at home? • Does the family support the patient in decision-making?

35. Transitioning… • The patient can receive: • A team of professionals who will come to them in their home, who have as their priority the patient’s and family’s comfort • Provision of medications, medical supplies and equipment related to the life-limiting illness • People who are willing to discuss death and dying, who will listen to their concerns and provide education to them and their families

36. Transitioning… • Do not have to sign a DNR • Do not have to have a 24-hour caregiver • Do not have to be ready to die • Do not have to “give up” anything – least of all hope

37. Palliative Care • Is supportive care! • Requesting a palliative care consult while the patient is hospitalized due to a chronic disease exacerbation begins the process of building a plan of care optimized for the patient’s needs at every level • Palliative care is not hospice and does not indicate a mandate to forgo curative care

38. Transitions… • A recent study in the New England Journal of Medicinedemonstrated that palliative care actually improved quality of life and longevity versus patients who did not receive palliative care as part of their overall oncology plan of care • This study is just one of several reported in the past 3 months focusing on the positive benefits of palliative care as an integral part of the healthcare continuum!

39. Grief, Loss and Bereavement for the Healthcare Professional • When a patient makes the choice to pursue comfort care rather than curative care, professionals may feel as though they have failed. Western medicine and society in general is death-denying and death is viewed as something that happens to someone without their consent or participation. Death is seen as a failure of the medical establishment.

40. Grief, Loss and Bereavement for the Healthcare Professional • One’s comfort with the topic of death is affected by personality, cultural, social and spiritual belief systems, life experiences and experiences with death • It is important to explore your own thoughts and feelings about death and dying in order to find the appropriate way to deal with the emotions surrounding the discussion of end of life care and death

41. Grief, Loss and Bereavement for the Healthcare Professional • Cumulative loss • Succession of losses experienced by the healthcare professional who works with patients with life-limiting illnesses and their families • Experience anticipatory and normal grief before and after the loss or death of a patient

42. Grief, Loss and Bereavement for the Healthcare Professional • Stages of adaptation to caring for patients at the end of life • Intellectualization • Emotional survival • Depression • Emotional arrival • Deep compassion

43. Grief, Loss and Bereavement for the Healthcare Professional • Intellectualization – breaking the knowledge of the loss down into manageable pieces, keeping it distant and scholarly • “Mrs. Jones expired last night” • Using euphemisms for death and reporting on it to co-workers

44. Grief, Loss and Bereavement for the Healthcare Professional • Emotional survival – don’t feel it yet, separated from emotions felt deeply • Tears may be present but they are few • Numbness • Easier to not think about it

45. Grief, Loss and Bereavement for the Healthcare Professional • Depression – realization that the loss is real, first hint that you have been touched by the loss • Real tears, sobbing, crying spells • Deep sense of emptiness and loss • Feels irrational

46. Grief, Loss and Bereavement for the Healthcare Professional • Emotional arrival – able to feel the loss, grieve for it and cherish it, develop a personal memory or attachment with the loss • “Photos” in the mind – can smile at memories • Tears and laughter are mixed when confronting the loss

47. Grief, Loss and Bereavement for the Healthcare Professional • Deep compassion – able to use the emotion related to loss to benefit others, able to relate to the pain others feel at losing someone • Empathy • Compassion • Deep concern

49. Conclusion • Modern end of life care is still evolving, it is coming full circle to the kind of care we used to give to those who were dying – compassionate, skilled, acknowledging death as a part of life • End of life care does not have to mean the end of living • Visit www.ghpco.org for more information about hospice and palliative care