➊ Palliative Care Social Worker: A Case Study
Sorry as well,that the system failed you and Palliative Care Social Worker: A Case Study wife. Brokerage Support Palliative Care Social Worker: A Case Study to service users to help them Palliative Care Social Worker: A Case Study their money most effectively on services. We were immediately bombarded with emergency docs, pharmacologists he was never on pain meds and the palliative care. Paul, I came across this article via Twitter Palliative Care Social Worker: A Case Study power of social media. A Palliative Care Social Worker: A Case Study review and meta-analysis indicated Palliative Care Social Worker: A Case Study remdesivir may be love the way you lie with improvement in the day recovery, low flow oxygen Spider Rape: A Short Story through days one How Did Hitler Gain Power In Germany 14, and invasive mechanical ventilation or extracorporeal Palliative Care Social Worker: A Case Study oxygenation requirement through days 14 to 28 of the follow-up time.
Hospice Social Work: How We Support Patients and Families
Vomiting Diarrhea Neck pain. A CDC case series analyzed 27 adult patients identified as having MIS-A: 9 patients reported to CDC, 7 from published case reports, and 11 patients described in three case series in peer-reviewed journals. The patients exhibited cardiovascular, gastrointestinal, dermatologic and neurological symptoms without severe respiratory presentation, similar to what has been observed in children experiencing MIS-C CDC, October 2, ; Johns Hopkins Center for Health Security, October 2, A recent retrospective cohort study of patients has found that MIS-A has a more heterogeneous clinical presentation than previously appreciated and is commonly underdiagnosed JAMA Netw Open, May 3, Dose-response with increasing risk for acute MI with increasing dose.
Dis, ; Pharmacoepidemiol Drug Saf, NSAIDs for symptom control. COVID and children. Antibiotics Antibiotics are not recommended to treat cases of COVID without clinical suspicion of bacterial co-infection. As with any medication, these drugs are also associated with potentially serious harms. Off-label prescriptions and the stockpiling of these drugs based on limited evidence to treat COVID has led to drug shortages and compromised care for patients who need these medications for their intended use. Antibiotics e. Why has this been in the news? How does this apply to my practice? Antiviral drugs e.
The only antiviral drug approved for treatment of COVID in Canada is remdesivir, which has been approved for treatment of adults and adolescents with severe symptoms of COVID and pneumonia who require additional oxygen Health Canada, July 28, However, the BC Centre for Disease Control strongly encourages further evaluation in approved clinical trials and recommends that, if used outside clinical trials, Remdesivir should be restricted to hospitalized patients requiring supplemental oxygen but not requiring non-invasive or invasive mechanical ventilation January 29, Further evaluation in approved clinical trials is strongly encouraged. If Remdesivir is used outside of clinical trials, full disclosure of risks and benefits with consideration of patient values and preferences are necessary, as it is not considered standard of care BCCDC, December 1, The likelihood of death from COVID in patients with mild to moderate disease is extremely low; therefore, antiviral drugs will have little or no effect on mortality in such patients CMAJ, April 29, Other antiviral drugs, such as hydroxychloroquine or chloroquine, are currently not recommended for treatment of COVID or prophylaxis due to insufficient quality evidence to support their use and the risk of adverse effects for patients BC Centre for Disease Control, July 6, Supporting evidence Remdesivir Remdesivir is authorized for use in adults and adolescents aged 12 years and older with a body weight of at least 40 kg.
Gilead Sciences Canada, Inc. In the ACTT-1 trial, remdesivir shortened time to recovery but failed to show a mortality benefit hazard ratio for death was 0. In an open-label randomized trial comparing remdesivir to standard care in patients with moderate COVID pneumonia, patients randomized to 10 days of remdesivir treatment did not have a statistically significant difference in change of clinical status based on a 7-point scale ranging from death to discharge 11 days after treatment initiation, while patients randomized to 5 days of remdesivir did show a statistically significant difference, but this difference was of uncertain clinical importance JAMA, August 21, Limitations in this publication include heterogeneity of data and the small number of studies pooled for data Reviews in Medical Virology, October 31, A systematic review and meta-analysis indicated that remdesivir may be associated with improvement in the day recovery, low flow oxygen support through days one to 14, and invasive mechanical ventilation or extracorporeal membrane oxygenation requirement through days 14 to 28 of the follow-up time.
Chloroquine and hydroxychloroquine A meta-analysis of randomized controlled trials suggests that there is no benefit to the addition of Hydroxychloroquine to the standard of care. A multicenter randomized open-label trial in patients with mild to moderate COVID found no improvement in clinical status with hydroxychloroquine, with or without azithromycin, compared to standard care. Patients taking hydroxychloroquine were more likely to have QT prolongation and elevated liver enzyme levels N Engl J Med, July 23, Randomized controlled trials that studied hydroxychloroquine as a prophylactic treatment for Covid suggest that this is not an effective preventative measure against Covid transmission JAMA Internal Medicine, September 30, ; New England Journal of Medicine, August 6, Cell-based therapy.
Another systematic review was recently published that also illustrates how MSCs could be considered as a potential and immediate antiviral therapy for COVID patients, on the basis of their anti-inflammatory, and immune-suppressive activity, contrasting directly the cytokine storms causing pneumonia and other organs disease Aging Dis, October 1, How does this apply to my practice? Supporting Evidence A double blind randomized controlled trial found that Colchicine reduced the length of supplemental oxygen therapy and hospitalisation among patients with moderate to severe COVID RMD Open, February 4, A systematic review and meta-analysis of colchicine treatment in COVID patients indicate that the drug improved the outcomes of COVID patients by reducing the severity and mortality of the disease.
Convalescent plasma. Supporting evidence Recent randomized trials have found no significant difference observed in clinical status or overall mortality between patients treated with convalescent plasma and those who received placebo PLoS Med, March 3, ; Intern Emerg Med, April 10, ; Crit Care Med, April 16, ; Lancet, May 14, Corticosteroids e. Supporting evidence A systematic review and meta-analysis of corticosteroid treatment in severe COVID patients showed that the treatment was associated with a decreased all-cause mortality. More trials are still required to confirm the results. Corticosteroids were found to decrease the occurrence of composite disease progression, but not increase the incidence of serious adverse events Signal Transduct Target Ther, February 21, Preliminary results f r om the RECOVERY Trial June 16, , where patients receiving 6 mg dexamethasone once daily orally or by intravenous injection were compared to patients receiving usual care, showed a reduction of deaths by one third in ventilated patients rate ratio 0.
No mortality benefits were seen in patients who did not require respiratory support 1. Trial results are pending publication. Currently there are systematic reviews and meta-analysis emerging based off of low-quality evidence and more randomized control trials are needed to make effective conclusions. In a prospective meta-analysis of clinical trials 7 randomized trials that included patients of whom died of critically ill patients with COVID, the study found that the administration of systemic corticosteroids, compared with usual care or placebo, was associated with lower day all-cause mortality JAMA, September 2, However, a recent systematic review and meta-analysis of observational studies and one RCT suggests that systemic corticosteroid therapy was not associated with reduction in short-term mortality but possibly with delayed viral clearance in patients hospitalized with COVID of different severities Journal of Infection and Public Health, September 29, Both studies are based off of RCTs and studies with limitations and low evidence.
Outside of patients requiring mechanical ventilation or supplemental oxygen, steroids may also be used if the patient has another compelling indication, such as an asthma exacerbation, refractory septic shock, or for fetal lung maturation in obstetric patients BC Centre for Disease Control, July 6, Inhaled furosemide. Immune modulators e. MMR vaccine. Supplements e. It is updated on a bi-weekly basis. A study of observational healthcare data of 14, individuals tested for SARS-CoV-2 with known blood type indicated that there may be an association between ABO and Rh blood types and infection and outcomes. The researchers found increased infection prevalence among non-O types. The study suggests that risk of intubation may be decreased among A and increased among AB and B types, compared with type O, while risk of death may be increased for type AB and decreased for types A and B Nature Communications, November 13, A Canadian multicenter retrospective analysis and nested prospective observational sub-study of 95 critically ill patients with COVID, identified patients with blood group A or AB were at an increased risk for requiring mechanical ventilation, continuous renal replacement therapy CRRT , and prolonged ICU admission compared with patients with blood group O or B.
They have stated that further work is needed to understand the underlying mechanisms Blood Advances, October 14, A study of data from WHO and Johns Hopkins University found that rates of COVID infection and death positively correlated with the proportion of the population with blood type A and negatively correlated with the proportion of the population with blood type B Epidemiol Infect, January 7, Who can be managed at home? Show no signs of respiratory distress. Show no signs of confusion. Are able to stay well hydrated. Have the appropriate resources and social supports to manage any comorbidities at home, self-isolate and carry out regular activities of daily living. Who should be hospitalized? Severe shortness of breath at rest. Difficulty breathing.
Increasing significant fatigue reported in some patients as a marker for hypoxemia without dyspnea. Reduced level of consciousness or new confusion. Cold, clammy or pale and mottled skin. Blue lips or face. Little to no urine output. Pain or pressure in the chest. Neck stiffness. Non-blanching rash. Coughing up blood. Counsel all patients about self-monitoring for red flag symptoms of worsening disease see Who should be hospitalized? Assess patients for pre-existing conditions that may put them at a higher risk of deterioration older age, asthma, COPD, cardiovascular disease and immunocompromising conditions are particularly relevant.
See Symptom management and comorbid considerations. For most patients being managed at home, telehealth visits can be scheduled on days 4, 7, and 10 following the onset of clinical illness or date of positive test result U pToDate, January 26, If appropriate, discuss and establish goals-of-care e. Instruct and support patients to self-isolate at home for 10 days MOH, May 21, Send patients all required paperwork electronically if feasible e.
Ask patients to take readings from instruments they have at home if available e. Establish a safety net. If patients live alone, support them to arrange for someone to check in on them regularly virtually or from a distance BMJ, March 25, If necessary, provide patients with information on symptomatic management , which is consistent with standard treatment for cold-like symptoms and influenza-like illnesses BCCDC, May 10, Antipyretics should only be used if patient has other symptoms that antipyretics would help treat in addition to a fever.
New or worsening cough. A teaspoon of honey. Only if cough is distressing, short-term, limited supply prescription for codeine linctus, codeine phosphate tablets or morphine sulfate oral solution may be considered. Shortness of breath dyspnea. Encourage relaxation and breathing techniques positioning, pursed-lip breathing, breathing exercises and coordinated breathing training. Improve air circulation by opening a window or door avoid using a fan because this can spread infection. The Canadian Thoracic Society April 7, recommends that: Patients with asthma restart or continue to use their prescribed inhaled maintenance therapy, regardless of COVID status. Prednisone can be used to treat severe asthma exacerbations, including those caused by COVID infection.
Patients who are already using nebulizers do so in a separate room from others and implement other infection control recommendations CTS generally recommends that patients switch from nebulized therapy to metered dose inhalers with spacing devices or dry powder inhalers during the COVID pandemic. Cardiovascular disease. Chronic obstructive pulmonary disease COPD. Patients who are already using nebulizers do so in a separate room from others and implement other infection control recommendations CTS generally recommends that patients switch from nebulized therapy to metered dose inhalers with spacing devices, dry powder inhalers, or soft mist inhalers during the COVID pandemic.
Previous studies have shown that patients with chronically higher blood glucose levels are more likely to acquire bacterial or some viral infections. During acute illness, patients may be susceptible to adverse drug events due to comorbidities or medicine use. If present, fever can be managed by administering either acetaminophen or ibuprofen CPS, April 20, Infants and young children considered to be at higher risk for severe illness from COVID are those with CPS, April 20, : medical complexity genetic, neurologic, metabolic conditions congenital heart disease obesity diabetes asthma or chronic lung disease sickle cell disease immunosuppression. Immunocompromised patients.
If immunocompromised patients with COVID are on immunosuppressant therapy, treatment may need to be modified or stopped. Do not delay life-saving treatment or emergency care CDC, December 29, An infectious diseases specialist especially one who has expertise working with patients who are immunocompromised may also need to be consulted for assistance with COVID management. See Top resources for condition-specific guidance. Older adults. Older adults are at increased risk of adverse events e. Pregnant women and newborns. The SOGC June 1, recommends continuing with routine administration of antenatal corticosteroids up to weeks of gestation.
Mother-to-child transmission and infant testing Systematic reviews have found that vertical transmission is rare, with only 4 of 86 newborns in one and 10 of of newborns in the other testing positive J Reprod Infertil, July 21, ; Cad Saude Publica, July 17, However, newborns are at risk of person-to-person spread after birth CDC, February 26, Breastfeeding COVID positive mothers should: Wash hands while holding the baby, bottles, breast pump or other materials Be masked while holding or feeding the baby Cough or sneeze away from the baby when holding or feeding Follow breast and skin cleansing hygiene before holding or feeding Clean breast pumps and bottles and do not share these supplies with other mothers MOH, November 10, If a mother is too sick to breastfeed, she can pump milk CPS, January 19, To assist in the short term, help patients create a self-management plan that will support their return to daily activities, including symptom management approaches e.
Discuss possible patient self-monitoring at home as appropriate, and advise patients when to seek additional care. To assist in the longer term, create a rehabilitation plan with patients, including their goals and interventions, and refer to the appropriate supports for interdisciplinary care. This may include physical, psychological, and psychiatric aspects of rehabilitation. Ensure continuity of care Agree on a plan for follow-up care and monitoring with the patient, tailoring it to their needs and symptoms Be alert to changes in symptoms and refer as necessary When possible, make information, documents and records available to patients and multidisciplinary team members.
After two consecutive negative specimens are collected at least 24 hours apart AND the patient has become afebrile and symptoms are improving for at least 24 hours. If swab remains positive, test again in approximately days once negative, conduct swab at least 24 hours later MOH, May 21, Personal risk assessment AHS, before every interaction. Hand hygiene PHO, March 16, before and after interaction. Infection control: healthcare worker and resident cohorting.
Healthcare worker cohorting can include: Designating providers to care for either ill residents or well residents. Limit the number of healthcare facilities and locations each healthcare worker accesses. Resident cohorting can include: Alternative accommodation in the home to maintain physical distancing. Cohorting of the well and unwell. Utilizing respite, palliative care, and other beds and rooms, as appropriate. Tip sheet for care providers conducting nasal and throat swabs with clients with cognitive impairment RGP Toronto, April 22, Active screening for all staff and visitors LTCHs must implement active screening of all staff, visitors and anyone else entering the LTCH for COVID with the exception of first responders, who should, in emergency situations, be permitted entry without screening.
Active screening for all residents LTCHs must conduct active screening and assessment of all residents, including temperature checks, at least twice daily at the beginning and end of the day to identify if any resident has fever, cough or other symptoms of COVID MOH, June 4, LTCH not under outbreak Testing must be conducted on every symptomatic resident and staff member. LTCH under outbreak In the event an outbreak of COVID is declared in the home, all staff in the entire home AND all residents in the home should be tested including on symptomatic and asymptomatic residents and staff members who have been in contact with cases.
Asymptomatic contacts of a confirmed case include: All residents living in adjacent room. Any other contacts deemed appropriate for testing based on a risk assessment by local public health unit. The local public health unit is responsible for managing the outbreak response. Local public health units have the authority and discretion as set out in the HPPA to coordinate outbreak investigation, declare an outbreak based on their investigation, and direct outbreak control measures MOH, June 4, Short term absences. A request must be submitted and approved by the LTCH. Upon return to the LTCH, residents must be actively screened refer to Active Screening of All Residents above but are not required to be tested or self-isolate.
Residents must be provided with a medical mask to be worn when outside of the LTCH if tolerated and reminded about the importance of public health measures including maintaining a safe distance of at least 2 metres from others and hand hygiene. Temporary absences. A request must be submitted and approved by the LTC. Upon return to the LTCH, residents must be actively screened refer to Active Screening above and self-isolate for 14 days.
Medical absences. Upon return to the LTCH, residents must be actively screened refer to Active Screening above but are not required to be tested or self-isolate. Emergency room visits that take place over a single night e. BookJane app [login required] Health workforce matching portal [login required]. CMPA Physician Advisors are available to provide support throughout the pandemic and can be reached at Monday to Friday from a. Preparing for work in a new LTCH. Review communication techniques for speaking with older patients, such as the use of person-centred language.
See Top resources below for more information. If you have any symptoms of COVID, do not conduct the visit and contact the home to cancel or reschedule pending test result. Upon arrival at the LTCH. Introduce yourself to the administrator and participate in the screening process. If you fail the screening, immediately leave the site, proceed to self-isolate PHO, April 10, and conduct virtual visits only. Have a discussion with the care staff to establish understanding of specific protocols and procedures within the LTCH.
Ensure you know how to summon assistance for a fire, cardiac arrest, and other emergencies. The colour codes used are the same for all of Ontario. If you do not know the colour code when you hear one, please ask. Determine which HCWs and staff are available to assist with any assessments or hands-on care, if necessary. Can communicate with staff or refer to a schedule, if available. Delivering care at the LTCH. After visiting the LTCH.
It takes between years to become a social worker. Social workers who want to work in a clinical setting must fulfill at least two years of supervised work experience before earning a license. Graduate-level study and clinicals also train candidates to diagnose and treat people suffering from mental illnesses or emotional issues. Students learn to apply social work theories and processes to individual, group, and family counseling.
Clinical social workers must obtain licensure to practice. Bachelor's-level candidates can pursue a specialty in mental health and substance abuse, community social work, or social work administration. Graduates can immediately enter the workforce or pursue a master's degree. People from all walks of life become social workers, but many share common traits that draw them to the occupation.
Social workers often demonstrate compassion, empathy, a desire for social justice, and patience. They must also be highly organized to manage multiple cases at once. Many students opt to attend programs accredited by the Council on Social Work Education CSWE , because it guarantees the curriculum meets certain academic standards. Many employers and graduate schools also prefer graduates from CSWE-accredited programs.
A prospective social worker's path depends on their career goals. Some specialties require a license and an advanced degree. These four-year programs teach students about legal and ethical standards in social work, case management, human behavior theory, psychology, and sociology. Core classes provide a generalist social work education. Hi Paul. This is a beautifully written and heartbreakingly sad story — as much for your loss as for the failure of our system in addressing the needs of your wife and your family. I agree with Cathy Faulds — in Stratford a patient such as your wife would have a family physician working to provide palliative care guidance and support.
As an emergency physician I sometimes get involved as patients approach death and are not prepared for some of the symptoms and processes that occur. I work with our family docs to help patients and families choose a path that is best for them and allow them the dignity of choosing the type of death that they want. I am sorry that you did not have this experience.
RIP Suzanne and my condolences to the family. Your post here reflects great dignity and that of your wife during one of the most difficult life stages we all have to face in various forms. I think it is this aspect that annoys me most. That mere politics of the health system should override basic respect for the courage and dignity of a human being who finds themselves at this most difficult of times. My admiration and sincere respect to you all. Hi Paul, Thanks for your article. My mother passed away last fall after suffering 4. This was possible because once treatment started my parents moved into my area and no longer had her family doctor readily accessible.
CCAC in my area immediately was able to refer us to a family physician who specialized in palliative care and always saw his patients in their own homes. He worked in concert with a nurse practitioner and unless they were out of town, they were usually readily available and always came together. Their blend of skills made them indispensable. They stayed caring for Mum from the beginning to the end really with the focus at the beginning on symptom and pain management.
I thought everyone had the ability to obtain a palliative care physician and an oncologist at the same time. I guess we were fortunate, or perhaps my region is, to have this particular doctor and nurse team in the area. Thanks for providing awareness that this is not always the case. That is a big problem. Some of it is of course, world-class but some parts required strong advocacy to ensure my Mum got the help she required. Getting collaborative communication between the original GP and original haemotologist was the first major difficulty.
Later on in treatment, any emergency hospital stays that arose generally due to frightening pneumonias resulting from chemo were particularly problematic on a number of dimensions. Or people who do not have the skills or resources to vigorously advocate for their loved one who has an incurable illness, or to be able to find a palliative care physician. Thank you for writing this article. Sincerely, Alison. I understand devastated! I recently lost my mom to COPD.
Her wishes were to have MAID step in and help her at the end. They failed us and my mom. False sense of hope. My dad, brother and I had to helplessly watch her die. I had to make very difficult decisions to help speed up the dying process as she was never supposed to get this far and be in this much pain. No palliative care till just 2 days before I called I totally related to your situation.
It definitely hit hard. Now if I can only get those bad visions out of my head to be able to move on and feel like my decisions to help her were the right ones. I am am perfectly certain your mother know how much you all loved her and how you did what you could to care for her. So very sorry for your loss! The more I hear the more I know the government shouldnt have say in a patients care. Americans are in such a quandry about our health care. Insurance premiums are getting out of reason , our care is becoming too costly for many.
Yet I was in dilusion that Canada had better health care. Sharing this story to my friends. Again my deepest sympathy! Both my parents passed with cancer also. It was of a very high quality, compassionately delivered, and of course, free, so that there was no economic burden to add to the emotional one. It was really only in this one respect that the system let us down. I am hoping we can make it better. In addition, all families should be able to disuss how they want to live until they die. Just knowing this enabled open discussion about end of life options. A beautiful book. Absolutely great advice. As a retired hospice nurse, I was often sad that family members or patients would not stop fighting for life which led to major suffering. Perhaps Palliative Care is easier for more to hear— even physicians who see hospice as giving up.
There exists a need for more education on this topic. He arrived at Emergency a couple of months ago to be told there was nothing they could do. The Palliative Care team took over and gave him treatment which repaired his bowel and he is now home on medication and enjoying his final days in this world. We need to start referring terminally ill people sooner to Palliative so that they have quality of life until the end. Your observations about our modern society are direct and sadly correct. I am sorry for your loss and am sure you feel honored to have been there when needed most. I have experienced sime of these things with my own family members. There is it seems like an opportunity for improvement in a good system.
There is room for a more considerate heart when it comes to healthcare design, not just in its administration. My wife and I lived in Gatineau Quebec. When she found out her Multiple Myeloma cancer was coming in like a vengeance we Kim myself and her Oncologist Dr. Arleigh McCurdy decided it was time she stopped chemotherapy! We were sent home on Feb 16th from that appointment at the General Hospital. Kim had chosen Mathieu Froment pallative care because she did not want to die at home! After not hearing anything for 6 days from CLSC. I called to see what was happening!
I had to get the doctor to send the paperwork again to the CLSC. Finally they got it that day! Kim was getting really bad by this day! Not really understanding what was happening to her! She would get up for the washroom and her legs were locking on her! She stopped eating! I had to get the CLSC Nurse to assess her for pallative but when she came she was answering most of her questions! She told us your not bad enough for pallative care! But she hadnt seen how she was earlier and within 1 hour she was out of it again! Finally the Nurse from Maison Froment called me and said they were booking an ambulance for the next morning at am. This was February 23rd.
We arrived there and they were great! Took care of her very well! Our yorkshire Chloe and I were able to live with Kim! The next day she incoherent most of the time! She passed away Feb 26 She was my wife and soulmate and she will be always missed and remember as a beautiful woman! It should not be so hard for desperate people to get the care they need. You hit the nail on the head. When I last worked in palliative care we did not wothold food and especially fluids. Withholding the basic necessities only serves to hasten desth and leave the dying in an uncomfortable state of living. It is inhumane. Our doctors and nurses need to spend some time in palliative care doing their formal education.
It may well have been the medically indicated thing. But the communication was appalling. We had a right to know what to expect, and to be advised in a timely, compassionate way, about these decisions. All too common a situation. We were luckier. My husband, declared terminal by the diagnostician ,had palliative care assigned immediately after meeting with the oncological surgeon and the radiation specialist but he had to push for MAID. It should be on offer.
He also pushed for a counsellor for each of us to guide us through the last months. They are available but doctors seldom tell patients or caregivers at this most stressful time of a terminal illness. They are an essential part of this process and go far in lowering stress. My husband died when and where he wanted to and our MAID team was wonderful- frank, friendly and very kind, reassuring. BUT had he been fearful and utterly accepting at the beginning, he too would have had to decay on a palliative ward, losing any semblance of self respect and control— two vital characteristics of this man who , at I feel very sorry for what the poor diplomat had to endure at yhe end of what had undoubtedly been a most interesting life.
And even more sorry for her spouse in whose memory it is so thoroughly and horribly engrained. Thanks very much for your comment. I am sorry for your loss, but heartened that your husband managed to get the care he needed. More and more people are recognizing that they can have bothpalliative Care and aggressive treatment at the same time. Yet in many places in the US are still the philosophy that if you are under aggressive treatment Palliative Care Has no place. I think everyone here understands what should happen in theory.
So sad. In the States, there is a difference between palliative care and hospice. Hospice is for the last months of life, when curative efforts have stopped. Palliative care, on the other hand, can begin even while curative efforts are pursued. In theory, it is the same here. Sooner than later. I know, because I work with Hospice. God bless to all involved!! In our case, both our oncologist and we ourselves recognized it was time for a deep discussion around palliative care. The system, unfortunately, failed us. Dear Paul, Thank you for sharing your heartfelt experience. I am sorry for your loss.
Your writing has ignited the fire in my soul to pursue my passion. To make a difference for both patients and their loved ones. Thank you and God Bless you and your family. Thanks for sharing this valuable information. It left me wondering how much control do I want to have over my destiny during the final days.. I think,for me, I want to have my family around, for sometime, saying goodbye, having a few good laughs, then drug me into a permanent sleep. Dying with dignity..
It irks me to no end to see people suffering at all when they are dying. This final event in ones life should be effortless, pain free, and calm. Maybe it is all about being prepared, and your article truly was an eye-opener. Thanks again for this. It will be food for thought all day now! I really believe that for many people at least, a fuller knowledge of what to expect and what decisions may have to be made, would relieve a little of the anguish, physical as well as emotional, of what is inevitably a grievous experience. It is truly sad that your wife did not receive palliative care in a timely manner. There is much confusion around the role palliative care can play even while receiving cancer treatment. Education and conversation is sorely needed for both health professionals and the public to break down barriers and demystify palliative care.
This Canadian Cancer Society funded project is an immersive play based on real narratives from both cancer patients and caregivers about palliative care. Feel free to share the word about this project. I am a hospice nurse in the US. We have different practices as to both palliative care and hospice. Where one commenter above indicates a DNR was required, that is not the case here for either palliative care OR hospice. You can be a full code on both, per Medicare. Some hospices individually dictate that you must be a DNR to sign on with their agency, but this is categorically a misrepresentation of the hospice benefit as well as a violation of the patients rights. However, as a clinician I do help a family decide at what point in decline it would be best to not subject a frail patient to an incredibly strenuous procedure guaranteed to break ribs with poor results.
To be hospice eligible, a cancer patient will have shown signs of disease progression not responding to treatment, and if the patient decides to discontinue pursuing curative treatment they can still purse palliative treatment with chemo and radiation that is covered by the hospice benefit. This is implemented while monitoring tumor size. If by the grace of God the palliative treatment actually succeeds in reducing the cancer beyond the designated parameter that differentiates between palliative and curative, the patient is freed from Hospice to pursue further curative treatment if they choose.
Patients with other non-cancer diagnoses heart failure, COPD, Alzheimers, etc must be evaluated and determined by a physician to have a prognosis of 6 months or less. A huge difficulty we still face just like in Canada is educating not only the public but physicians on Hospice and Palliative care, despite Medicare providing the benefit for 30 years now. Few people understand the difference between them and even more difficult, when to initiate either.
But palliative care does NOT require hospice enrollment in the US because the patient can continue to pursue curative treatment. He presents an excellent analysis of this very problem. We have a similar problem in the US as you do in Canada. Sheer numbers. There are so few palliative care specialists available. We have one palliative care group in my town through our university health system, and they are overwhelmed.
I work for a separate health system that employs over 10, people in a 16 County area and has only one nurse practitioner who specializes in palliative care. In any hospice organization the physicians who serve as medical directors MUST be specialty certified but often have other full time practices. In my own company I am the only registered nurse with additional specialty certification in palliative care.
My organization is trying to encourage the other nurses to obtain this certification but it is very time consuming. We are working under crushing workloads already, and often too exhausted to contemplate this path of study. I see the challenges from within the organizational standpoint and it seems Sysyphean…. It so often breaks my heart when my families finally reach hospice having made it through with a minimum of the support that could have changed quite literally everything.
I think philosophically our system here in Ontario accepts that palliative care can run in paralllel with other forms of treatment. Operationally, however, it is very different, both because of failures of understanding by practitioners as well as patients, and because of a lack of resources. I think the problem is that people fight so hard to live. And medical staff fight so hard to heal. Sadly, sometimes quality really is better than quantity. They feel like it means they are giving up. I know from the people I have met and heard from that many people resist the implications of a palliative care consultation.
Her oncologist recognized she and I were ready when she referred Suzanne. The system failed her. I have next to no regrets regarding the treatments we chose for the 2 years he was able to fight his cancer. And he did. However, all I able to think about since his death in April of is the last two weeks of his life and how absolutely horrible they were. And what did I learn? So I find myself really struggling with the last days of his life more than anything else in this whole process… I thought watching him suffer from treatment was hard. That was nothing in comparison to the last 2 weeks of his life. I hope you find some peace from these thoughts. You obviously loved him deeply, which I am sure he knew.
This is so sad to read Paul, as a Palliative Care Specialist nurse in SW Sydney, Australia, of some 17 years, we have a great relationship in the most part with the Oncology and Radiation Oncolgy staff and work togethher to ensure the best quality and plan for EOL care, often the patient gets their wish to die at home well supported. This is the aim and not only for cancer patients. We clearly discuss what to expect and how best to manage care whilst still affirming life. Ideally meeting palliative care much earlier would have, no doubt, been beneficial for all of you. Our palliative care team sees people often from the point of diagnosis. We call ourselves supportive and palliative care. The preparation time is important, as is living with a life threatening illness.
Making the moments count, getting on with living even facing death. I think we are getting better at providing timely palliative care. As with everything we need more resources to accomplish this for all families. I have heard from many people who received palliative care consultations in a timely way, and in almost every case, they found it eased their path. My sister 54 just a month b4 her death never met with a palliative care physician, but just 5 days before she died was placed on hospice care. She too lost her oncologist who had treated her breast cancer mets for 6 years. This is a sad story very similar to what I have heard from others. The handoff from the active-treatment specialist is often awkward and even hurtful.
This is an aspect I did not address but deserves deep attanetion. This issue of the hand-off from the active-care specialist demands deep attention. I have met or heard from so many people who were shocked, hurt and felt abandoned. Surely it does not have to be like this. Too many patients and families think palliative care means giving up. They are afraid it means no cares given. She received a timely referral and despite considerable efforts by me, we were unable to secure the appointment we sought. Hi Paul, I am so sorry for your loss as well as for the suffering of your beloved wife in her last days. Retired now, I used to be an ICU social worker. I saw my role as being able to offer patients information so that they could make informed decisions about their care.
A palliative consult when one is diagnosed with a life threatening illness should be something willingly offered versus a fight. Such a consult helps ensure quality of life as the patient continues treatments as well as helps them know what to expect, both throughout treatment and when enough is enough. Palliative care is the most humane and compassionate thing we can offer people facing devastating illnesses. If a physician resists this request stating they are able to do alone what a palliative team would do, it is time to change doctors. Thank you for your letter and for helping people see the importance of a good death both for the patient and for the loved ones they leave behind. In our case Suzanne was referred for palliative care six months before her death.
I did not describe this in the article, but it was only through considerable persistence by me over many weeks that I was even able to find out that the referral had been denied. In our case, at least, it was not a failure of our oncologist to make the referral, but the refusal of the system to honour it. Heartbreaking, Mr. Adams, and an all too frequent reality, Thank you very much for documenting this difficult tale. I am so very sorry for your loss. Sorry as well,that the system failed you and your wife. As a nurse myself, I have a hard time letting go when a terminal diagnosis is made. However, giving them the access they need to assist in making informed choices and options is one thing I try to ensure happens.
The fact that you were not given the right to speak with a palliative care physician is unforgiveable. Your article is an eyeopener for many. Education for our patients and families is so often overlooked and I am sorry for that. You were not totally prepared for the process of death your wife may go through in her journey and I am certain you were taken by surprise and unprepared for most what you witnessed.
No excuse is a good one. I know not everyone in this situation is emotionally ready to deal with each turn in the course of their disease. However, my wife was a very rationalistic person. She wanted to know exactly where she stood and wanted to know where she was likely to be standing next. She had a thirst for information. Throughout the course of her treatment, we were usually able to get the information she wanted and needed, even if it took some persistence to do so. But in this case, persistence which was considerable but that I did not describe in any detail in the article did not pay off. We tried hard to get access but were denied. Amazing that Our modern western society pretends to ignore the dying process and refuses to prepare us for the inevitable at great cost and human suffering.
I think the system is trying to adapt, but too slowly, and the result is that palliative care is being rationed in effect. I was not aware, Paul, of the end process your wife endured. And that you endured. I only knew she had passed. My sincerest sympathies to you and your kids. Thank you very much for sharing this private and painful information with us, the public, many of whom will be in similar circumstances in years to come. Forewarned we need to press for reforms. Many thanks and best wishes to your grieving family.
I am sorry for your loss Paul. As a palliative care provider practicing in the U. I am struck by an interesting distinction that stems from our different health systems. I am one who wishes our system was like the Canadian single payer system. But perhaps in this situation, natural health interfered with an early referral for Palliative Care. In the U. Palliative care, on the other hand Can be introduced at any time in the disease trajectory and is reimbursed as if it were any other specialist.
This enables us to aggressively manage symptoms and begin discussions around wishes and goals of care during the active treatment phase. I wish I could say that because the reimbursement model exists that our patients get earlier referrals all the time. Alas, this is not the case often enough. Often the primary specialist Oncologist, pulmonologist, etc. And we too have a lack of sufficient numbers of Palliative providers to meet the growing demand. Thanks for being part of a growing number of voices speaking out for the need to enhance palliative care knowledge.
Thanks for your comment. My sense is that in theory palliative care is allowed from the point that advanced disease is diagnosed. However, it may be that the resources are not yet in place, though they seems to have been growing in recent years, to meet potential demand. In effect, these precious services are being rationed, or triaged, in some places by making this sharp distinction. So very sorry for your lost.
I hope your story will prevent this happening to other vulnerable persons with cancer. We have to educate people, give them more knowledge as to what to expect, when they go to palliative care. This is quite sad, and though, too common for sure. Still, this couple received ANY care far too late, and that is tragic for them both. She would have been comforted by a better understanding and I would have been in a better position to understand her wishes. I have done palliative care as a PSW and also as a volunteer to Hospice.
I feel passionate about end of life care. The people I looked after appreciated an honest approach form those around them. Helping people to fulfill unfinished business and to give them compassion without pity is so important. When asked questions the answers where not always easy but they were necessary. Sometime an ill person cannot rage or discuss things with someone they love. They feel as if they are burdening a loved one. Thank you for your work. What generosity to choose to help people in such a sad and trying moment in their lives.
Thanks for this, Paul. And please accept my sincere condolences. My experience was slightly different and, as I read the responses to your piece, I realize why that was. When my wife, Sheila Bird, was dying of what was likely the breast cancer she had twenty-five years earlier returning in a different form, she made the decision to stop all treatment when it became apparent that it would neither prolong or enhance the time she had left. The very moment she made that intention known to the medical staff it was as if a switch had been thrown. Suddenly the arms-length, professional demeanour of the attending physicians and nurses a necessity of the job, of course became one of intense caring, incredible support in a very human way, and — dare I say it — love.
It was as if the inevitable had been accepted by Sheila — which it had — and now they could all be honest with her about the future and its variables. We were transferred to PC medical staff and the treatment we received from that moment up to her death in my arms at the Maycourt Hospice in Ottawa four months later was absolutely excellent. But I realized that our experience hinged on the fact that Sheila made the decision herself and that precipitated the shift in treatment.
I would hope that the system could work that way for everyone. Thanks again, Paul, for shining a light on it. Thanks Ken. I saw her here in town occasionally when I worked on the Hill. I think we were living abroad when she died. I am pleased to hear that she was able to feel a degree of control in her final weeks and months. Suzanne had come to a point of acceptance too, though very late in the course of her disease. Had she been afforded the opportunity to meet earlier with a palliative care physician I truly believe she would have been ready in a fuller sense, not just emotionally ready for the end but prepared to meet the specific rigours of those final days.
Paul, our family encountered late realization as well. Thoughts and prayers going out to your family Paul. I imagine your presence was a great comfort. I am so saddened that you and your wife were treated like an expired commodity. Please know my thoughts are with you and your family. I am so sorry to read about this. It is so very moving…. While Chris, I do meet occasionally; our paths crossed when you taught at the University of Manitoba. As a healthcare provider, I feel so sorry that these memories and this experience cloud your grieving. I hope, Paul, that you can soon find peace and are able to celebrate the life of your beloved wife.
I can only suggest that for others dealing with serious disease, take all the support that is offered, even if you think it is uneccessary. The social workers at the Cancer Centre and with your local health dept are a fountain of information and support; their role is especially important in helping families navigate and access other support services. Perhaps their title suggests they are for those in financial distress, but this is not at all the case. As both these specialities grow in popularity, but not in medical staffing, people are feeling they are not serviced well, while years ago there was almost no service at all.
We have a huge gap in treatment advances vs availability. This is a matter of political will — write your MPP. The Emergency Department, as you well know, is not the best atmosphere for these decisions. I have been a bit overwhelmed by the outpouring of stories I have heard in recent days. Many people have stories similar to mine or sadly, worse in some cases.
The good news is that some others have received the palliative care they wished to have in a timely way. With very few exceptions, they were very grateful and pleased with the quality of that care. We know what to do, in other words. Thanks Johnston. I hope you are well. I see that Christopher has dragooned you into various committees! As a follow on to my previous post I did document what was good about palliative care and where it was lacking and gave the director of Palliative Care of the hospital a copy. I sat with her as she read my comments and it brought tears to her eyes as she read both the good and the not so good. She then asked if I would allow her to share my comments with her staff.
As I felt totally comfortable with what I had said in my written comments I agreed to allow her to use it any way she wanted. The director called me back on two occasions to give me updates on how they have implemented changes as a result of both my concerns and my positive comments. She was at this point still trying to fix the problem with faster response time for both delivery and pickup of required hospital beds, portable toilets, turning blankets etc. Heart breaking. Pallative care is not comfort care? Wondering at what point pallative changes to comfort care?
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