Palliative Care: What every primary care doctor needs to know
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A lecture given at a Primary Care Conference in Massachusetts - on the important role primary care physicians could play in ensuring good palliative care for patients, communication, hospice, myths & realities
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Palliative Care: What every primary care doctor needs to know
- 1. Palliative Care:What every primary care doctor needs to know Suzana Makowski, MD MMM FACP
- 2. Overview Why? What? How?
- 3. My venture into palliative care: lessons from Billings, Montana
- 4. Why discuss Palliative Care? 90 million Americans are living with life-threatening illness
- 5. Why discuss Palliative Care? The number is expected to double in the coming years
- 7. http://www.youtube.com/user/MassGeneralHospital NEJM Study (2010): Early Palliative Care improves longevity and quality of life for patients with advanced non-small cell lung cancer
- 8. What is palliative care?
- 9. Not just end-of-life care…
- 10. Heart disease Lung diseae Palliative care is part of your practice and includes treatments that often prolong life
- 11. Adapted from Frank Ferris – EPEC-O
- 12. Myth: Palliative care = just end-of-life care We often help patients whose life expectancy is good
- 13. Myth: Palliative care = just pain management We could help manage challenging cases and symptoms
- 14. Palliative Care
- 15. Myth: Palliative care = “no more treatment” We assess the values & goals of a patient, designing care around them
- 16. Second City
- 17. Much of our practice is for patients nearing end-of-life
- 19. Oncotalk Video http://depts.washington.edu/oncotalk/videos/index.php?cat=transitions “What’s most important?”
- 20. What is hospice?
- 21. *DME = durable medical equipment (bed, oxygen, commode, etc.)
- 22. When to consider hospice?
- 23. When to consider hospice? We are bad at prognosticating: over optimistic So how do we decide? Would you be surprised if your patient died in the next 6 months? Have the hospitalists/housestaff seen the patients more frequently than you have in the last several months? Patient’s goals of care
- 24. We are bad at Prognostication
- 25. 20% accurate Prognostication 5.3 Over-optimistic “I think this patient is going to live for four months”
- 26. 40-70% die in pain Prognostication 60% suffer 35%loose life savings $
- 27. Why don’t we offer prognosis? We’re afraid we’ll be wrong Prognostication We don’t want to take away Hope
- 28. Oncotalk Video: http://depts.washington.edu/oncotalk/videos/index.php?cat=transitions Myth: Palliative care is about giving up, loosing hope
- 29. Medical management you have been prescribing still applies. Opioids may be helpful for dyspnea and pain Constipation is the opioid only side effect one does not gain tolerance to give pro-motility (softener not enough) Respiratory suppression is due to overdose, not appropriate dose Terminal secretions: repositioning, stop artificial feeding and hydration, anticholinergics – avoid suctioning why? Nausea: often due to dopamine receptor in chemoreceptor trigger zone haloperidol = metoclopromide - promotility Delirium: common causes still apply and may be reversible! – constipation, urinary retention, infection, pain, medications Avoid morphine in renal failure – fentanyl, methadone, perhaps oxycodone preferable Assuring good symptom control Some pearls
- 30. On an average day in Massachusetts: Massachusetts facts
- 31. More than half die after a period of declining health: Massachusetts facts
- 32. MA: 67% want to die at home
- 33. MA: only 24% die at home
- 34. Health care proxy law (1990) Hospice benefit for MassHealth Mandated hospice benefit law (1995) Out-of-hospital Comfort Care/DNR protocol (2000) Pediatric palliative care program (2006) MOLST – Medical Orders for Life Sustaining Treatment (2011) Massachusetts facts: strengths
- 35. Only 17% of surveyed patients ever spoke with their physicians about their end-of-life preferences (AARP) 45% of MA nursing home residents surveyed live with persistent pain 22-24% of MA deaths occur at home, despite preferences Families continue to struggle financially with caring for the seriously ill Fewer than 100 palliative care physicians in our state, inadequate workforce Lack of hospice benefit for those with Mass Health Basic, Limited, or Essential plans MA received a “C” in national report card C Massachusetts facts: we can do better
- 36. Some help:
- 37. You practice Palliative Care every day Palliative care includes any care that enhances QOL – regardless of its effect on longevity (it may prolong life!) We need your help: Ensuring goals Alleviating suffering (patient and family) “Would you be surprised…?” = hospice eligibility screen Identifying Goals of care (as opposed to problems) help maintain or discover hope Summary
- 38. Thank you Thanks to many, including: www.life.com (Sept 1, 2009), my friends and family
- 40. Eric Cassell: “A good physician treats the disease; a great physician treats the patient who has the disease. “ “ THE obligation of physicians to relieve human suffering stretches back into antiquity. Despite this fact, little attention is explicitly given to the problem of suffering in medical education, research, or practice. I will begin by focusing on a modern paradox: Even in the best settings and with the best physicians, it is not uncommon for suffering to occur not only during the course of a disease but also as a result of its treatment. “
- 41. How to learn more EPEC (Education on Palliative & End-of-Life Care) Lois Green Learning Community www.loisgreenlearningcommunity.org Get Palliative: www.getpalliativecare.org Pallimed Connect
Editor's Notes
- My story:This is April. I met her in my clinic in Billings. She first came to me for symptom management of her metastatic breast cancer. She also wanted to know what to eat, how to keep her function high. She was curious about our “Hope for Tomorrow” program for cancer patients. She and her husband joined – and participated in yoga, cooking class, groups support with mindfulness. This picture was taken 6 weeks before she died. 1- my patients found me. They wanted someone to listen, to manage their symptoms while someone else battled their illness, someone to help make plan “b” and to address their whole person.2- I realized I was not as good at managing symptoms for patients as I thought I was. I thought Zofran was the be-all-and-end-all for nausea. I was wrong. I thought opioids were taught in residency. I was wrong. I thought at end of life, all meds, except morphine and ativan were given, generally speaking. I thought I knew how to tell who was dying.3- I liked tending to the seriously ill. I was intrigued and curious about their ability to live so very fully. To find joy. To talk about difficult things and to find meaning. I often found them to be more alive than many. They showed me what hope really meant.
- Everybody dies.Cancer continues to be one of the leading causes of death.Good symptom management, coordination of care and help patients live better and longer.The obligation of the physician is to alleviate suffering.
- I used to think that this was the model. We “treat” and then we help people die peacefully. I was wrong.
- It is more like this… but I still don’t fully agree with this picture. After all – it is usually symptoms (except when there are screens) that bring our patients to us: dyspnea, nausea, pain… But anyway, curative and palliative therapies tend to work hand in hand. You do this every day, and better than most.
- How often do I hear: “they are not ready for palliative care…” they still want to be treated.Beta-agonists are palliative. Diuretics for heart failure are palliative. Granted, they can extend lives as well… but they certainly alleviate symptoms.
- The paradigm of palliative care is to approach the person from a multi-dimensional model. Biopsychosocialspiritual was the way I learned it in medical school. Mind-body-spirit might be the way integrative medicine physicians call it. Good care, is another name. Most of us tend to 1-6 with our patients all the time. Even in palliative care, 7 and 8 are often not in the mix.
- Nurse with metastatic breastca – loves to golf and to work 12 hour shifts.Hip pain was limiting her activity, however. How to respond?Intrathecal pump – coordinated between neurosurgery, anesthesia, and palliative care
- Case of intractable crying
- LL is a 57 yo woman with metastatic pancreatic cancer, diagnosed 5 years ago.She now presents to hospital with:Pain (rectal)Breathlessness (pleural effusion and pericardial effusion)Anorexia, weight lossFatigueHer goals have always been to live as long as possible, to see her children grow, and in the words of USC, to “fight on!”Pain: Opioids, steroids, plus: nerve block – impar or sub-gastric ganglion.Dyspnea: Opioids, chlorpromazine, plus: thoracentesis, pericardial window
- Everybody dies.Cancer continues to be one of the leading causes of death.Good symptom management, coordination of care and help patients live better and longer.The obligation of the physician is to alleviate suffering.
- Everybody dies.Cancer continues to be one of the leading causes of death.Good symptom management, coordination of care and help patients live better and longer.The obligation of the physician is to alleviate suffering.
- We want to offer hope… so how can we?Story: 21 year old, dying of adenocarcinoma – Crohn’s – bowel obstructionAfter he was told that the cancer was found everywhere, there there was no more curative treatment available…He asked:Will I have to stay in the hospital or can I get home to see my dog? – He had a 4 month old golden retriever. He didn’t want to see her in hospital – just at home.He is at home now. His brother brought him his golden retriever home. She now visits daily – when he is up for it.He asked his hospice nurse: Will I see my best friend before I die? Where is she? In Germany. Well, we shall see then.They found an agency to help. She flew home 3 days later to spend time with him.I asked him if he had any questions… He asked:When will the bad pain start again? – I answered, If I do my job well, if the hospice nurses do theirs well, it will never start again.
- About 100 years ago, when physicians were at a very critical historical moment and they realized that their treatments were relatively ineffective, prognosis had incredible salience. Patients came to doctors and doctors cultivated the ability to predict what would happen.But as doctors acquired more effective treatments, the impetus to prognosticate declined. There is this presumption that disease will be treated and eliminated. So why bother to predict what will happen? The disease is going to get better because doctors are so powerful and so knowledgeable and so effective.A lack of attention to prognostication can result in patients' dying badly. For instance, 40 to 70 percent of Americans die in pain, 80 percent die in institutions rather than at home as many prefer, 60 percent of Americans have significant suffering when they die.About 35 percent of families lose all or most of their life savings in the course of caring for the person who's dying. And I believe that the poor state of prognostic knowledge and prognostic practice is a factor that is contributing to these bad outcomes.If patients and doctors knew that the patient was dying, they might institute interventions like stopping painful treatment, like having better financial planning that would maybe mitigate some of those bad outcomes.Do doctors know a patient's prognosis and avoid telling it, or do doctors themselves not know what a patient's prognosis is?There is an absence and avoidance of prognosis in the profession. Less than a quarter of textbook entries have any information about prognosis, and only 4 percent of published research is on prognosis.How well do doctors do in predicting a patient's outcome?A. I just published a study a few months ago in The British Medical Journal in which we looked at physicians' prognoses in 500 terminally ill patients. We found that with a very liberal standard of accuracy only 20 percent of the prognoses were accurate. On average, physicians overestimate survival by a factor of 5.3 And this is not what they told the patients; it's what they told us. They'd say, ''I think this patient is going to live for four months.'' And they died within a week.
- About 100 years ago, when physicians were at a very critical historical moment and they realized that their treatments were relatively ineffective, prognosis had incredible salience. Patients came to doctors and doctors cultivated the ability to predict what would happen.But as doctors acquired more effective treatments, the impetus to prognosticate declined. There is this presumption that disease will be treated and eliminated. So why bother to predict what will happen? The disease is going to get better because doctors are so powerful and so knowledgeable and so effective.A lack of attention to prognostication can result in patients' dying badly. For instance, 40 to 70 percent of Americans die in pain, 80 percent die in institutions rather than at home as many prefer, 60 percent of Americans have significant suffering when they die.About 35 percent of families lose all or most of their life savings in the course of caring for the person who's dying. And I believe that the poor state of prognostic knowledge and prognostic practice is a factor that is contributing to these bad outcomes.If patients and doctors knew that the patient was dying, they might institute interventions like stopping painful treatment, like having better financial planning that would maybe mitigate some of those bad outcomes.Do doctors know a patient's prognosis and avoid telling it, or do doctors themselves not know what a patient's prognosis is?There is an absence and avoidance of prognosis in the profession. Less than a quarter of textbook entries have any information about prognosis, and only 4 percent of published research is on prognosis.How well do doctors do in predicting a patient's outcome?A. I just published a study a few months ago in The British Medical Journal in which we looked at physicians' prognoses in 500 terminally ill patients. We found that with a very liberal standard of accuracy only 20 percent of the prognoses were accurate. On average, physicians overestimate survival by a factor of 5.3 And this is not what they told the patients; it's what they told us. They'd say, ''I think this patient is going to live for four months.'' And they died within a week.
- About 100 years ago, when physicians were at a very critical historical moment and they realized that their treatments were relatively ineffective, prognosis had incredible salience. Patients came to doctors and doctors cultivated the ability to predict what would happen.But as doctors acquired more effective treatments, the impetus to prognosticate declined. There is this presumption that disease will be treated and eliminated. So why bother to predict what will happen? The disease is going to get better because doctors are so powerful and so knowledgeable and so effective.A lack of attention to prognostication can result in patients' dying badly. For instance, 40 to 70 percent of Americans die in pain, 80 percent die in institutions rather than at home as many prefer, 60 percent of Americans have significant suffering when they die.About 35 percent of families lose all or most of their life savings in the course of caring for the person who's dying. And I believe that the poor state of prognostic knowledge and prognostic practice is a factor that is contributing to these bad outcomes.If patients and doctors knew that the patient was dying, they might institute interventions like stopping painful treatment, like having better financial planning that would maybe mitigate some of those bad outcomes.Do doctors know a patient's prognosis and avoid telling it, or do doctors themselves not know what a patient's prognosis is?There is an absence and avoidance of prognosis in the profession. Less than a quarter of textbook entries have any information about prognosis, and only 4 percent of published research is on prognosis.How well do doctors do in predicting a patient's outcome?A. I just published a study a few months ago in The British Medical Journal in which we looked at physicians' prognoses in 500 terminally ill patients. We found that with a very liberal standard of accuracy only 20 percent of the prognoses were accurate. On average, physicians overestimate survival by a factor of 5.3 And this is not what they told the patients; it's what they told us. They'd say, ''I think this patient is going to live for four months.'' And they died within a week.
- About 100 years ago, when physicians were at a very critical historical moment and they realized that their treatments were relatively ineffective, prognosis had incredible salience. Patients came to doctors and doctors cultivated the ability to predict what would happen.But as doctors acquired more effective treatments, the impetus to prognosticate declined. There is this presumption that disease will be treated and eliminated. So why bother to predict what will happen? The disease is going to get better because doctors are so powerful and so knowledgeable and so effective.A lack of attention to prognostication can result in patients' dying badly. For instance, 40 to 70 percent of Americans die in pain, 80 percent die in institutions rather than at home as many prefer, 60 percent of Americans have significant suffering when they die.About 35 percent of families lose all or most of their life savings in the course of caring for the person who's dying. And I believe that the poor state of prognostic knowledge and prognostic practice is a factor that is contributing to these bad outcomes.If patients and doctors knew that the patient was dying, they might institute interventions like stopping painful treatment, like having better financial planning that would maybe mitigate some of those bad outcomes.Do doctors know a patient's prognosis and avoid telling it, or do doctors themselves not know what a patient's prognosis is?There is an absence and avoidance of prognosis in the profession. Less than a quarter of textbook entries have any information about prognosis, and only 4 percent of published research is on prognosis.How well do doctors do in predicting a patient's outcome?A. I just published a study a few months ago in The British Medical Journal in which we looked at physicians' prognoses in 500 terminally ill patients. We found that with a very liberal standard of accuracy only 20 percent of the prognoses were accurate. On average, physicians overestimate survival by a factor of 5.3 And this is not what they told the patients; it's what they told us. They'd say, ''I think this patient is going to live for four months.'' And they died within a week.
- Everybody dies.Cancer continues to be one of the leading causes of death.Good symptom management, coordination of care and help patients live better and longer.The obligation of the physician is to alleviate suffering.
- Good symptom management, coordination of care and help patients live better and longer.The obligation of the physician is to alleviate suffering.This is an important role for the primary care physician… not merely of the oncologist, cardiologist, pulmonologist, nephrologist.This was a role I cherished as a primary care physician. I was trusted to ride the tides – good and bad – with my patients. My role was not merely to fight, but to be with them, to support them, to advice, to lend strength, to counsel. Patients often see less of you once they are under the care of specialists – and yet, I would argue, your role is as critical. And given the shortage of palliative care specialists, the existance of only ½ day per week outpatient clinic in MA, this work cannot be done without you.I also need your help on another level. Often I hear from oncologists and other specialists that I should not be the one to give the bad news, or have the code status discussion, or introduce hospice. They have been caring for the patient for years. - well you have dibs on that.You know the patient’s families. You often know their stories, their values, their hopes outside of medical care. This is what matters. A lesson I learned years ago was from You must not destroy God’s creatures. It is not: dragonfly, remove it’s wings – peppertree, but Peppertree, add wings to it, dragonfly.There is an opportunity to heal, in your hands when illness is advanced and medicine no longer able to cure – heal, as in to make whole, to help the person rediscover themselves- as a mother, a sister, a wife, a teacher, a lover of Cape Cod beaches…
- You can help them secure their hopes… for how they wish to be cared for at the end of life…
- And avoid what most of us will end up facing
- You have help…
- But there is work to be done…We need the help of our generalists: family medicine, general internal medicine, pediatricians, etc.
- Help our way… Engage with grace – the one slide project – promoted over ThanksgivingNational healthcare decisions day – In April – this year, this weekend. Perhaps we could coordinate something for next year?
- Everybody dies.Cancer continues to be one of the leading causes of death.Good symptom management, coordination of care and help patients live better and longer.The obligation of the physician is to alleviate suffering.