1 / 42

Coordination of Hospice and Palliative Care in ESRD

List three (3) factors associated with the need for providing hospice care to kidney patients. Describe the Medicare Hospice Benefit, including the requirements for ESRD patients to receive hospice care.Identify three (3) barriers to providing hospice care for kidney patients. . Objectives. 1. Hi

toki
Télécharger la présentation

Coordination of Hospice and Palliative Care in ESRD

An Image/Link below is provided (as is) to download presentation Download Policy: Content on the Website is provided to you AS IS for your information and personal use and may not be sold / licensed / shared on other websites without getting consent from its author. Content is provided to you AS IS for your information and personal use only. Download presentation by click this link. While downloading, if for some reason you are not able to download a presentation, the publisher may have deleted the file from their server. During download, if you can't get a presentation, the file might be deleted by the publisher.

E N D

Presentation Transcript


    1. Module 4 Developed by ANNA and the Kidney End-of-Life Coalition Coordination of Hospice and Palliative Care in ESRD

    2. List three (3) factors associated with the need for providing hospice care to kidney patients. Describe the Medicare Hospice Benefit, including the requirements for ESRD patients to receive hospice care. Identify three (3) barriers to providing hospice care for kidney patients. Objectives

    3. 1. High symptom burden of ESRD Aging population Shortened life expectancy/high mortality rate Multiple comorbidities 2. Poor prognosis of some elderly stage 4 and 5 chronic kidney disease patients Significant cognitive impairment 3. Underutilization of hospice in ESRD High discontinuation of dialysis rate (26% in US) Poor quality of death Why is hospice care relevant to ESRD?

    4. HD patients median number of symptoms = 9 Pain in over 50% Associated with impaired Health Related Quality of Life (HRQoL) Associated with depression High Symptom Burden of ESRD Cohen et al. (from American Psychiatric Publishing Textbook of Psychosomatic Medicine) found fatigue to be the most burdensome of symptoms as reported, along with insomnia (36%), pruritis or itching (35%), neuropathic symptoms (29%), poor spirits (24%), nausea and vomiting (20%). Source2 Davison et al, Kidney International 2006, found similar reports from patients. This study by Davison found that symptom burden accounted for 29% of the impairment in physical HRQoL and 39% of the impairment in mental HRQoL. Source3Cohen et al. (from American Psychiatric Publishing Textbook of Psychosomatic Medicine) found fatigue to be the most burdensome of symptoms as reported, along with insomnia (36%), pruritis or itching (35%), neuropathic symptoms (29%), poor spirits (24%), nausea and vomiting (20%). Source2 Davison et al, Kidney International 2006, found similar reports from patients. This study by Davison found that symptom burden accounted for 29% of the impairment in physical HRQoL and 39% of the impairment in mental HRQoL. Source3

    5. Association Between Symptoms and Quality of Life Measures Patients with 2 or more symptoms have a statistically significant lower quality of life.Patients with 2 or more symptoms have a statistically significant lower quality of life.

    6. Age of Prevalent ESRD Patients

    7. Annual rate (23%) or > 70,000 deaths 16 37% life expectancy (age and sex matches) 8% CPR survival to hospital discharge High in-hospital deaths High percentage of co-morbidities High Mortality Rate Risk of death of a 45 year old patient with ESRD is 20 times that of a person who is the same age and does not receive dialysis Risk of death of a 45 year old patient with ESRD is 20 times that of a person who is the same age and does not receive dialysis

    8. Life Expectancy ESRD Patients

    9. Survival rates are lower for ESRD than for cancer patients. Survival Rates for Cancer and ESRD Patients

    10. Age Functional ability Nutritional status Comorbid illnesses (e.g. DM, MI, CHF) Predictors of Poor Prognosis for ESRD Patients

    11. Advanced age in elderly patients (aged 75 years or greater) Patients with high comorbidity scores (e.g. modified Charleston Mobility score of 8 or greater) Marked functional impairment (e.g. Karnofsky performance status score < 40) Severe chronic malnutrition (e.g. serum albumin level < 2.5 g/dL using the bromcresol green method) Increased Risk Factors for Older Patient Deaths Prognosis is particularly poor for chronic kidney disease patients with 2 or more of these characteristics. Prognosis is particularly poor for chronic kidney disease patients with 2 or more of these characteristics.

    12. Charleston Comorbidity Index (CCI) Remember, a modified Charleston Mobility score of 8 or greater is a risk factor for older patient deaths.Remember, a modified Charleston Mobility score of 8 or greater is a risk factor for older patient deaths.

    13. Elevated C- Reactive Protein levels Low BMI < 18.5, undernourished, cachexic appearance Increased Protein Catabolic Rate (PCR) Elevated Malnutrition Inflammation Score (MIS) Subjective Global Assessment of Nutritional Status (Baker & Detsky) Low cholesterol Low serum phosphorus Low Vitamin D levels Decreased skinfold measurements Elevated troponin, BNP Low BP Use of a central venous catheter for dialysis access Poor functional status walking, transferring ,ADLs etc Other Prognostic Indicators for Increased Mortality Risk

    14. 2009 Dialysis Deaths Underutilization of Hospice in ESRD As this chart shows, 65% of patients who withdrew from dialysis in 2009 used hospice, compared to just 6% of patients who continued dialysis through death and used hospice. Overall, only 21% of all dialysis patients who died in 2009 used hospice.As this chart shows, 65% of patients who withdrew from dialysis in 2009 used hospice, compared to just 6% of patients who continued dialysis through death and used hospice. Overall, only 21% of all dialysis patients who died in 2009 used hospice.

    15. Hospice services reduce the number of hospitalizations initiated by end-of-life events Reduces end-of-life costs per patient Patients are afforded the option of living and dying at home. Among patients who withdrew: 11% of those not receiving hospice care died at home 45% of those receiving hospice care died at home Benefits of Hospice in ESRD Medicare costs for hospitalizations in the end of life would be reduced for both those withdrawing from dialysis and those choosing not to withdraw, if the patient elects hospice care. Medicare costs for hospitalizations in the end of life would be reduced for both those withdrawing from dialysis and those choosing not to withdraw, if the patient elects hospice care.

    16. Medicare Benefit Policy Manual Chapter 9 Coverage of Hospice Services Under Hospital Insurance 10 Requirements General: Hospice care is a benefit under the hospital insurance program. To be eligible to elect hospice care under Medicare, an individual must be entitled to Part A Medicare and be certified as terminally ill. An individual is considered to be terminally ill if the medical prognosis is that the individuals life expectancy is six months or less if the illness runs its normal course [] Medical services for a condition completely unrelated to the terminal condition for which hospice was elected remain available to the patient if he or she is eligible for such care. What is the Medicare Hospice Benefit (MHB)?

    17. Medicare Benefit Policy Manual Chapter 11, End Stage Renal Disease 50.6.1 Home Health and Hospice Benefits Available for ESRD Beneficiaries: Medicare beneficiaries can receive care under both the ESRD benefit and the home health or hospice benefits. The key is whether or not the services are related to ESRD. 50.6.1.4 Coverage Under Hospice Benefit: If the patients terminal condition is not related to ESRD, the patient may receive covered services under both the ESRD benefit and the hospice benefit. A patient does not need to stop dialysis treatment to receive care under the hospice benefit. Consequently, hospice agencies can provide hospice services to patients who wish to continue dialysis treatment. Medicare Hospice Benefit, cont

    18. Eligibility for the MHB requires all of the following conditions are met: Patient is eligible for Medicare Part A (hospital insurance) The attending physician and the hospice medical director certify that the patient is terminally ill (6 months or less to live if the illness runs its normal course) Patient signs a statement choosing hospice care instead of other Medicare-covered benefits to treat their terminal illness Note: Medicare will still pay for covered benefits for any health problems that arent related to the patients terminal illness Patient receives care from a Medicare-approved hospice program Eligibility for the MHB

    19. The written certification must include: The statement that the individuals medical prognosis is that their life expectancy is 6 months or less if the terminal illness runs its normal course; Specific clinical findings and other documentation supporting a life expectancy of six months or less; and Signatures of the attending physician and hospice medical director Hospice Certification Initial certification must be signed by the attending physician and the hospice medical director toshow an agreement that this patient has 6 months or less to live if the terminal disease runs it's normal course. Communication between the attending physician and hospice medical director is important to avoid conflict in the patients care plan. Initial certification must be signed by the attending physician and the hospice medical director toshow an agreement that this patient has 6 months or less to live if the terminal disease runs it's normal course. Communication between the attending physician and hospice medical director is important to avoid conflict in the patients care plan.

    20. ESRD may be used as a terminal diagnosis if: The patient is not seeking dialysis or transplant; and Cr clearance < 10 ml/min (15 for DM) Serum creatinine > 8 (6 for DM) Signs/symptoms of renal failure Or, the hospice provider agrees to be responsible for the cost of the dialysis treatments, should the patient wish to continue with dialysis ESRD as a Terminal Diagnosis for Hospice In the first scenario where the patient does not seek dialysis or transplant, he/she may use the Medicare Hospice Benefit. In the second scenario, it may be beneficial to also check with the hospice providers fiscal intermediary (FI) as to what dialysis-related expenses may still be covered, even if the patient wishes to continue dialysis treatment. Each FI may differ in their regulations on payment of dialysis treatment.In the first scenario where the patient does not seek dialysis or transplant, he/she may use the Medicare Hospice Benefit. In the second scenario, it may be beneficial to also check with the hospice providers fiscal intermediary (FI) as to what dialysis-related expenses may still be covered, even if the patient wishes to continue dialysis treatment. Each FI may differ in their regulations on payment of dialysis treatment.

    21. Hospice is given in periods of care Patients can get hospice care for two, 90-day periods followed by an unlimited number of 60-day periods At the start of each period of care, the hospice medical director or other hospice doctor must recertify that the patient is terminally ill to continue hospice care Hospices are paid a per diem rate based on the number of days and level of care provided during the election period. Levels of care are defined as: Routine Home Care Continuous Home Care Inpatient Respite Care General Inpatient Care Some Facts about Hospice Care Tags from Medicare Claims Processing Manual: Routine home care (refer to 40.2.1) Continuous home care (refer to 40.2.1) Inpatient respite care (refer to 40.2.2) General inpatient care (refer to 40.2.2)Tags from Medicare Claims Processing Manual: Routine home care (refer to 40.2.1) Continuous home care (refer to 40.2.1) Inpatient respite care (refer to 40.2.2) General inpatient care (refer to 40.2.2)

    22. Discharge from hospice will occur as a result of one of the following: The beneficiary decides to revoke the hospice benefit The beneficiary moves away from the geographic area that the hospice defines in its policies as its service area The beneficiary transfers to another hospice The beneficiarys condition improves and he/she is no longer considered terminally ill. In this situation, the hospice will be unable to recertify the patient. The beneficiary dies Discharge from Hospice There may be extraordinary circumstances in which a hospice would be unable to continue to provide hospice care to a patient. These situations would include issues where patient safety or hospice staff safety is compromised. The hospice must make every effort to resolve these problems satisfactorily before it considers discharge an option. All efforts by the hospice to resolve the problem(s) must be documented in detail in the patients clinical record and the hospice must notify the fiscal intermediary and State Survey Agency of the circumstances surrounding the impending discharge. The hospice may also need to make referrals to other relevant state/community agencies (i.e., Adult Protective Services) as appropriate. There may be extraordinary circumstances in which a hospice would be unable to continue to provide hospice care to a patient. These situations would include issues where patient safety or hospice staff safety is compromised. The hospice must make every effort to resolve these problems satisfactorily before it considers discharge an option. All efforts by the hospice to resolve the problem(s) must be documented in detail in the patients clinical record and the hospice must notify the fiscal intermediary and State Survey Agency of the circumstances surrounding the impending discharge. The hospice may also need to make referrals to other relevant state/community agencies (i.e., Adult Protective Services) as appropriate.

    23. Patients have the right to change providers only once during each period of care Patients have the right to ask for a review of their case if they are found to not be eligible for further hospice care because of improvement in their condition The hospice provider should give notice explaining the patients right to an expedited review by an independent reviewer hired by Medicare, called a Quality Improvement Organization (QIO) Conditions for Coverage for ESRD Facilities, Subpart C Patient Care 494.70, (a) Standard: Patients Rights (6) The patient has a right to be informed about his or her right to execute advance directives and the facilitys policy regarding advance directives Patient Rights If dialysis facility will not follow the request for DNR for a pt they must inform pt and assist pt in finding a suitable facility that will follow the DNR request.If dialysis facility will not follow the request for DNR for a pt they must inform pt and assist pt in finding a suitable facility that will follow the DNR request.

    24. ANNA Standard of Care (page 128) The patient and family will receive guidance with advance care planning. The patient will receive appropriate pain and symptom management, and psychological and spiritual support throughout the chronic kidney disease and dying experience. Role of the APN Cannot certify terminal illness to initiate hospice Can be designated as attending if patient requests them to and can bill for services provided A nurse practitioner (NP) serving as an attending physician should participate as a member of the interdisciplinary group that establishes and/or updates the individuals plan of care. The NP may not serve as or replace the medical director or physician designee. Services provided by an NP who is not the patients attending physician are included under nursing care Nursing Guidelines Referring to Services provided by an NP who is not the patients attending physician are included under nursing care: - This means that, in the absence of a NP, a registered nurse (RN) would provide the service. Payment is encompassed in the hospice per diem rate and may not be billed separately regardless of whether the services are provided by an NP or an RN.Referring to Services provided by an NP who is not the patients attending physician are included under nursing care: - This means that, in the absence of a NP, a registered nurse (RN) would provide the service. Payment is encompassed in the hospice per diem rate and may not be billed separately regardless of whether the services are provided by an NP or an RN.

    25. ESRD patient with terminal lung cancer still benefitting from and wishing to continue dialysis ESRD patient with end stage heart failure who wishes to continue dialysis ESRD patient who wishes to withdraw from dialysis ESRD patient with a gangrenous foot who wishes continued dialysis but no surgery ESRD Scenarios for Hospice Referral Some example scenarios above. Other comorbidities may include a malignancy, COPD, advanced cardiac disease or cachexia or albumin < 3.5 gm/dl. Other factors to consider is when a renal patient experiences a Sentinel event such as an MI, CVA, amputation from a toe to a BKA or AKA. Also serum albumin <3.5gm/dl is a good indicator of survival. One year survival=50%. Two year survival=17%. Source14 To clarify the the fourth bullet, if the patient has a gangrenous foot and does not elect to have surgery, then the gangrenous foot would be a terminal condition. In any scenario, the terminal diagnosis must be unrelated to the kidney disease, i.e. the cause of the terminal diagnosis must be a different disease process than renal failure. Some example scenarios above. Other comorbidities may include a malignancy, COPD, advanced cardiac disease or cachexia or albumin < 3.5 gm/dl. Other factors to consider is when a renal patient experiences a Sentinel event such as an MI, CVA, amputation from a toe to a BKA or AKA. Also serum albumin <3.5gm/dl is a good indicator of survival. One year survival=50%. Two year survival=17%. Source14 To clarify the the fourth bullet, if the patient has a gangrenous foot and does not elect to have surgery, then the gangrenous foot would be a terminal condition. In any scenario, the terminal diagnosis must be unrelated to the kidney disease, i.e. the cause of the terminal diagnosis must be a different disease process than renal failure.

    26. If the hospice plan includes palliative dialysis, the hospice company will negotiate a rate to reimburse the dialysis center from their payment from Medicare at an unbundled rate of the Medicare allowable The plan is developed with the patient, hospice provider and patients nephrologist Dialysis goals change from optimum care to control of symptoms (usually 1-2 treatments per week) Contracting with Dialysis Providers and Hospice - Each case needs to be reviewed by the nephrologists and hospice medical director to customize care plans and goals- Each case needs to be reviewed by the nephrologists and hospice medical director to customize care plans and goals

    27. Lack of education by hospices, nephrologists, renal healthcare team, patients and families Cost of care Confusion regarding the differences between palliative care and hospice services What are the barriers to providing hospice care for kidney patients?

    28. Hospice providers May be unaware that dialysis treatments may be a part of the palliative care plan May be unaware that patients can receive hospice and dialysis benefits simultaneously under specific circumstances Nephrologists May need more education about how to introduce end-of-life care discussions and assist patients/families in making decisions May not understand what hospice services are available or how to make referrals Do not routinely refer patients to hospice when they choose to withdraw from dialysis Barrier: Lack of Education Hospice providers: Patients with end-stage renal disease who also have terminal conditions (e.g. cancer) may suffer from symptoms such as lung congestion due to fluid buildup that can be relieved with dialysis. In these cases, the goal of dialysis treatment changes from long-term survival to symptom relief. Thus, dialysis can be used as one part of a palliative care treatment plan. If the patient has a terminal condition due to disease processes other than kidney failure, patients may receive both dialysis and hospice benefits. This issue will be covered under cost as a barrier to providing hospice services to dialysis patients. Nephrologists: Based on the shortened life expectancy for most kidney patients, it is urgent for physicians to identify patients for whom end-of-life decisions need to be discussed. Resources (written and programmatic) are now available to help physicians prepare for these discussions, like the Renal Physician Associations Shared Decision-Making Guideline. Source15 In addition, physicians do not automatically know about hospice or value the role that hospice can play to help patients and families once the decision is made for withdrawal from dialysis. More education about hospice services as well as referral procedures needs to be readily available. Hospice providers: Patients with end-stage renal disease who also have terminal conditions (e.g. cancer) may suffer from symptoms such as lung congestion due to fluid buildup that can be relieved with dialysis. In these cases, the goal of dialysis treatment changes from long-term survival to symptom relief. Thus, dialysis can be used as one part of a palliative care treatment plan. If the patient has a terminal condition due to disease processes other than kidney failure, patients may receive both dialysis and hospice benefits. This issue will be covered under cost as a barrier to providing hospice services to dialysis patients. Nephrologists: Based on the shortened life expectancy for most kidney patients, it is urgent for physicians to identify patients for whom end-of-life decisions need to be discussed. Resources (written and programmatic) are now available to help physicians prepare for these discussions, like the Renal Physician Associations Shared Decision-Making Guideline. Source15 In addition, physicians do not automatically know about hospice or value the role that hospice can play to help patients and families once the decision is made for withdrawal from dialysis. More education about hospice services as well as referral procedures needs to be readily available.

    29. Renal Health Care Team Lack of confidence in discussing end-of-life issues with dialysis patients (social workers are generally more knowledgeable than nurses or managers) Lack of knowledge about referral process and rules for referral Fear of bringing down dialysis facilitys outcomes measures Patients and Families Usually welcome beginning conversation about preferences for care in advance of condition deterioration May have difficulty accepting a terminal diagnosis, necessitating early discussions May be unaware of benefits of palliative care and hospice Barrier: Lack of Education, cont Renal Health Care Team: All members of the healthcare team need to be educated about how to begin ongoing discussions with patients about end-of-life decisions as a routine part of the patient care plan. Education must also include indications for hospice services, the rules governing payment coverage, and the referral process. The overall benefits of offering palliative dialysis to patients outweigh the possible impact on the facilitys outcomes due to the low percentage of patients who are likely to be receiving palliative dialysis at the facility at any given time. Additionally, the facility is free to comment on their Dialysis Facility Report (as prepared by the UMKECC) to explain their outcomes. Comments can be sent to CMS, their State Surveyor and/or UMKECC during the comment period. The UMKECC report can also be used to assess the current number of patients who are withdrawing from dialysis, as some of these patients may be eligible for continued palliative dialysis, if given the option and evaluation. Patients and Families: Patients and their families are very individual in their ability to participate in end-of- life decision making, and sometimes require time to absorb prognosis information and move toward productive discussions about their end-of-life wishes. Thus, it is incumbent on care providers to begin discussions early and provide education as needed. Benefits of palliative care and hospice services should be introduced when appropriate and when families can use this information to meet ongoing goals of care.Renal Health Care Team: All members of the healthcare team need to be educated about how to begin ongoing discussions with patients about end-of-life decisions as a routine part of the patient care plan. Education must also include indications for hospice services, the rules governing payment coverage, and the referral process. The overall benefits of offering palliative dialysis to patients outweigh the possible impact on the facilitys outcomes due to the low percentage of patients who are likely to be receiving palliative dialysis at the facility at any given time. Additionally, the facility is free to comment on their Dialysis Facility Report (as prepared by the UMKECC) to explain their outcomes. Comments can be sent to CMS, their State Surveyor and/or UMKECC during the comment period. The UMKECC report can also be used to assess the current number of patients who are withdrawing from dialysis, as some of these patients may be eligible for continued palliative dialysis, if given the option and evaluation. Patients and Families: Patients and their families are very individual in their ability to participate in end-of- life decision making, and sometimes require time to absorb prognosis information and move toward productive discussions about their end-of-life wishes. Thus, it is incumbent on care providers to begin discussions early and provide education as needed. Benefits of palliative care and hospice services should be introduced when appropriate and when families can use this information to meet ongoing goals of care.

    30. Potential cost barriers include: Hospice providers may choose not to cover the cost of the dialysis treatment if the patient is not eligible for the MHB Families may be financially dependent on the patients income and do not wish the patient to stop dialysis Payment depends on ESRD diagnosis If the patient has a non-ESRD diagnosis as a reason for hospice referral, the patient may continue dialysis and be on hospice at the same time its the patients choice If the patient has no other diagnosis for hospice referral, other than ESRD, or his/her terminal diagnosis is a direct result of the ESRD, then the hospice would have to pay for the dialysis treatment from their per diem reimbursement Barrier: Cost of Care When the patient has no other diagnosis for hospice referral other than ESRD: - Hospice agencies can still provide hospice services to patients who wish to continue dialysis treatment but dont have a terminal diagnosis unrelated to the ESRD. The hospice would then be responsible for the cost of treatment. In this situation, the hospice and dialysis providers may sign a contract to decide how the patients treatments will be paid for. There are some hospice programs that are willing to do this. If the program is not willing, then the patient would need to stop dialysis treatment in order to be eligible for the Medicare Hospice Benefit. When the patient has no other diagnosis for hospice referral other than ESRD: - Hospice agencies can still provide hospice services to patients who wish to continue dialysis treatment but dont have a terminal diagnosis unrelated to the ESRD. The hospice would then be responsible for the cost of treatment. In this situation, the hospice and dialysis providers may sign a contract to decide how the patients treatments will be paid for. There are some hospice programs that are willing to do this. If the program is not willing, then the patient would need to stop dialysis treatment in order to be eligible for the Medicare Hospice Benefit.

    31. Palliative care The goal of palliative care is to prevent and relieve suffering and to support the best possible quality of life for patients and their families, regardless of their stage of disease or the need for other therapies, in accordance with their values and preferences. The patient does not have to have a prognosis of 6 months or less to live. Elements of palliative care include: Continuous pain and symptom assessment and control Psychosocial and spiritual support to the family Barrier: Palliative Care vs. Hospice Care Palliative care is appropriate for people who chose to undergo or remain on dialysis and for those who choose not to start or continue dialysis. RPAs Clinical Practice Guideline Recommendation No. 9 states Palliative care services and interventions should be offered to all AKI, CKD, and ESRD patients who suffer from burdens of their disease in an effort to improve patient-centered outcomes [] Source15 Palliative care is provided by an interdisciplinary team, including nephrology and community-based professionals, hospice specialists and palliative care providers, to patients and families living with a severe, advanced illness. In some facilities they have palliative care across the continuum and they can follow patients on an out-patient setting. Also, the team is a constant and can help patient and family with better understanding of the disease process, especially after a sentinel event such as MI, CVA, etc. Chronic kidney disease (CKD) is a chronic illness and palliative care teams should be involved from the beginning for symptom management, advance health care directives and family support. The professionals providing treatment should receive training in assessment and management of symptoms and in advanced communication skills. RPAs Clinical Practice Guideline Recommendation No. 10 states We recommend a systematic approach for communication about diagnosis, prognosis, treatment options, and goals of care. Good communication is important. Source15 Patients should be offered the option of dying where they prefer, including at home with hospice care, provided there is sufficient and appropriate support to enable this option. Support should also be offered to patients families, including bereavement support where appropriate. Dialysis patients for whom the goals of care are primarily comfort and symptom management (palliative dialysis) should have quality measures distinct from patients for whom the goals of therapy are rehabilitative (life prolongation with optimization of functional capacity). Palliative care is appropriate for people who chose to undergo or remain on dialysis and for those who choose not to start or continue dialysis. RPAs Clinical Practice Guideline Recommendation No. 9 states Palliative care services and interventions should be offered to all AKI, CKD, and ESRD patients who suffer from burdens of their disease in an effort to improve patient-centered outcomes [] Source15 Palliative care is provided by an interdisciplinary team, including nephrology and community-based professionals, hospice specialists and palliative care providers, to patients and families living with a severe, advanced illness. In some facilities they have palliative care across the continuum and they can follow patients on an out-patient setting. Also, the team is a constant and can help patient and family with better understanding of the disease process, especially after a sentinel event such as MI, CVA, etc. Chronic kidney disease (CKD) is a chronic illness and palliative care teams should be involved from the beginning for symptom management, advance health care directives and family support. The professionals providing treatment should receive training in assessment and management of symptoms and in advanced communication skills. RPAs Clinical Practice Guideline Recommendation No. 10 states We recommend a systematic approach for communication about diagnosis, prognosis, treatment options, and goals of care. Good communication is important. Source15 Patients should be offered the option of dying where they prefer, including at home with hospice care, provided there is sufficient and appropriate support to enable this option. Support should also be offered to patients families, including bereavement support where appropriate. Dialysis patients for whom the goals of care are primarily comfort and symptom management (palliative dialysis) should have quality measures distinct from patients for whom the goals of therapy are rehabilitative (life prolongation with optimization of functional capacity).

    32. Hospice Care The goal of hospice care is to provide pain and symptom management to the patient who, by certification of two physicians, has 6 months or less to live, if the disease runs its normal course. Elements of hospice care include: Nursing services Hospice aide service Psychosocial, spiritual and bereavement support Barrier: Palliative Care vs. Hospice Care, cont Bereavement follows the family for up to 13 months after the death of their loved one. Bereavement follows the family for up to 13 months after the death of their loved one.

    33. Review and adjust dialysis medications (i.e. hold ESA, IV Iron, Vitamin D Analogs) No lab draws unless requested by hospice physician for management of a specific symptom Schedule dialysis to limit fluid overload Palliative Care Adjustments Remember, if labs are done, they need to be acted on. Additionally, if meds are given, they need to be monitored with labs. The hospice physician/NP is referring to whichever physician or NP the patient has selected to oversee his/her hospice care. This person could be from a hospice program, dialysis facility or nephrology office. Remember, if labs are done, they need to be acted on. Additionally, if meds are given, they need to be monitored with labs. The hospice physician/NP is referring to whichever physician or NP the patient has selected to oversee his/her hospice care. This person could be from a hospice program, dialysis facility or nephrology office.

    34. Well-being: physical, psychological, social and spiritual Model of Quality of Life

    35. The Surprise Question: Would I be surprised if this patient dies in the next year? Estimate of prognosis is based upon patients age, functional status, medical condition, including comorbidity and recent sentinel events, and this surprise question Surprise question prognostic tool is available online: http://touchcalc.com/calculators/sq There is not the same degree of precision of tools to estimate prognosis for patients with AKI Identifying Patients At Risk to Die in 6-12 Months 1 out of 5 ESRD patients voluntarily withdraws from dialysis each year Patients on dialysis have a 30-50% shorter lifespan Question for participants: How many of you have had a patient go into hospice in the last 6 months? Consider how differently a patient might have died if he/she was receiving hospice care services. 1 out of 5 ESRD patients voluntarily withdraws from dialysis each year Patients on dialysis have a 30-50% shorter lifespan Question for participants: How many of you have had a patient go into hospice in the last 6 months? Consider how differently a patient might have died if he/she was receiving hospice care services.

    36. Estimate of prognosis Patient designation of a healthcare agent Completion of an end-of-life care plan, including preferences for life-sustaining treatments and preferred site of death Pain and symptom assessment and management Timely referral to hospice Clinical performance measures for quality care for dying dialysis patients

    37. Two (2) Roads to Death The end of life for renal patients can take two paths, as shown in the slide. The usual road is comforting to the patient and family. The difficult road is burdensome and very uncomfortable for families. If the patient experiences the difficult road, a lot of symptom management is necessary, and its important that there is intervention. Some patients and families may not opt for hospice but may be open to having a palliative care team involved.The end of life for renal patients can take two paths, as shown in the slide. The usual road is comforting to the patient and family. The difficult road is burdensome and very uncomfortable for families. If the patient experiences the difficult road, a lot of symptom management is necessary, and its important that there is intervention. Some patients and families may not opt for hospice but may be open to having a palliative care team involved.

    38. Competence Collegiality Communication Continuity of Care Compassion Focus discussion on not if, but rather when to switch from restorative/invasive care to palliation. Following the Five Cs Quote by Claudio Ronco, MDQuote by Claudio Ronco, MD

    39. Care of ESRD patients on dialysis requires expertise not only in the medical maintenance of patients on dialysis but also in the palliative care that focuses on management of pain and other symptoms, advance care planning and attention to ethical, psychosocial and spiritual issues related to starting, continuing withholding and stopping dialysis. Remember

    40. Kidney End-of-Life Coalition Website www.kidneyeol.org RPA/ASNs Shared Decision-Making in the Appropriate Initiation of and Withdrawal from Dialysis, 2nd Edition Visit www.renalmd.org to order a hard copy ANNA Online Professional Education Additional educational modules on end-of-life care are available at www.prolibraries.com/anna Educational Resources - Kidney End-of-Life Coalitions website has additional information on palliative care and hospice for dialysis patients, including many presentations and free educational materials for professionals, patients and family members. - Kidney End-of-Life Coalitions website has additional information on palliative care and hospice for dialysis patients, including many presentations and free educational materials for professionals, patients and family members.

    41. Weisbord S, Fried L, Arnold R et al. Prevalence, Severity, and Importance of Physical and Emotional Symptoms in Chronic Hemodialysis Patients. J Am Soc Nephrol. 2005;16:2487-2494. Cohen LM, Levy NB, Tessier E, Germain M. Renal Disease. In American Psychiatric Publishing Textbook of Psychosomatic Medicine, Levenson J (ed.). American Psychiatric Publishing, Inc., Washington, DC, 2005, pp 483-493. Davison SN, Jhangri GS, Johnson JA. Cross-sectional validity of a modified Edmonton symptom assessment system in dialysis patients: A simple assessment of symptom burden. Kidney Int. 2006;69(9):1621-1625. Kimmel P, Emont P, Newmann J, Danko H, Moss A. ESRD patient quality of life: symptoms, spiritual beliefs, psychosocial factors, and ethnicity. Am J Kidney Dis. 2003;42(4):713-721. U.S. Renal Data System, USRDS 2010 Annual Data Report: Atlas of Chronic Kidney Disease and End-Stage Renal Disease in the United States, National Institutes of Health, National Institute of Diabetes and Digestive and Kidney Diseases, Bethesda, MD, 2010.* *The data reported here have been supplied by the United States Renal Data System (USRDS). The interpretation and reporting of these data are the responsibility of the author(s) and in no way should be seen as an official policy or interpretation of the U.S. government. Cohen, L, Davis, M. Did this patient die with hospice? New questions in caring for patients with ESRD [PowerPoint]. February 28, 2006. Available at: http://www.kidneyeol.org/DavisPPT.pdf. Accessed September 10, 2010. Moss, A. Relevance of Palliative Care and Hospice for Dialysis Patients [PowerPoint]. January 20, 2010. Available at: http://www.kidneyeol.org/Moss_1-20-10.pdf. Accessed September 10, 2010. Beddhu S, Bruns FJ, Saul M, Seddon P, Zeidel ML. A simple comorbidity scale predicts clinical outcomes and costs in dialysis patients. Am J Med. 2000;108:609-613. Standard Information Management System [Network database]. Midlothian, VA: Mid-Atlantic Renal Coalition; 2010. References

    42. Schmidt, R. Hospice in ESRD: To Withdraw or Not To Withdraw [PowerPoint]. October 2005. Available at: http://www.kidneyeol.org/SchmidtPPT.pdf. Accessed September 10, 2010. Medicare Benefit Policy Manual. Baltimore, MD: Centers for Medicare & Medicaid Services; 2010. Publication 100-02. Medicare Claims Processing Manual. Baltimore, MD: Centers for Medicare & Medicaid Services; 2010. Publication 100-04. Conditions for Coverage for End-Stage Renal Disease Facilities. Baltimore, MD: Centers for Medicare & Medicaid Services, US Dept of Health and Human Services; 2008. Vol. 73, No. 73. American Nephrology Nurses Association. End-of-Life Decision-Making and the Role of the Nephrology Team [PowerPoint]. 2004. Available at: http://www.prolibraries.com/library/flash/serveflash.php?libname=anna&sessionID=317. Accessed September 10, 2010. Renal Physicians Association/American Society of Nephrology Working Group. Clinical Practice Guideline on Shared Decision-Making in the Appropriate Initiation of and Withdrawal from Dialysis, 2nd Edition. Rockville, MD; 2010. Moss A, Ganjoo J, Sharma S et. al. Utility of the Surprise Question to Identify Dialysis Patients with High Mortality. Clin J Am Soc Nephrol. 2008;3:1379-1384. Cohen LM, Ruthhazer R, Moss AH, Germain MJ. Predicting Six-Month Mortality for Patients who are on Maintenance Hemodialysis. Clin J Am Soc Nephrol. 2009, Dec 3. Ronco C. Do Not Dialyze. Int J Artif Organs. 2006;29(11):1021-1022. End-Stage Renal Disease Workgroup. Recommendations to the Field. Promoting Excellence in End-of-Life Care, The Robert Wood Johnson Foundation. Missoula, MT; 2002. References

More Related