I guess it shouldn't surprise me, but when I looked at the information in the April, 2008 Dartmouth Atlas of Health Care, I was taken aback. The Atlas looked at the outcomes of chronic disease care and tracked these outcomes against the resources attached to them. It was found that when it comes to getting care for a chronic disease, geography matters. Depending on where they live and what hospital or health care organization they use, these patients receive very different care.
These variations in care appear not to be linked to how sick the patients are, and, it turns out that the places where more resources are available are not the places demonstrating better care and better health outcomes.
This article focuses on supply sensitive care for patients with severe chronic illness in the last 2 years of their life. Areas that had offered more resources actually had a slightly higher mortality rate (over a period of up to 5 years) for patients following acute myocardial infarction, hip fracture, and colorectal cancer diagnosis--with no difference in functional status. As well, in higher-resourced settings, patients reported worse access to care and greater waiting times, with no difference in patient-reported satisfaction with care.
Paul Batalden's quote is so appropriate: "Every system is perfectly designed to get the results it gets."
Monday, 24 November 2008
Sunday, 23 November 2008
Sunday, 16 November 2008
The Go-to Person for Legal Advice
Joan Rush is an expert in the legal field and a savvy researcher. She understands Advance Care Planning at so many levels. In her law practice, she consults in the areas of health law, corporate governance, insurance law, and legal issues relevant to health care providers and the financial services industry. Prior to establishing her consulting practice, Joan was Vice President and General Counsel of a Canadian life insurance company.
Joan is a member of the Board of Directors for Community Living B.C., and a former adjunct Professor at the Faculty of Law, University of British Columbia. Joan completed her LL.M. thesis in the area of health law and ethics in 2005 and received her Master of Laws degree from UBC in 2006. Her thesis focused on advance directives and the law.
Her comprehensive overview of the state of advance directives in Canada, was first published in the Canadian Journal of Medical Radiation Technology (now the Journal of Medical Imaging and Radiation Sciences ). Visit www.jmirs.org to access current and past issues of JMIRS, and coming soon, CJMRT.
Draw Me a Response
This great diagram is found in the article by Joanne Lynn and Nathan Goldstein (Advance Care Planning for Fatal Chronic Illness: Avoiding Commonplace Errors and Unwarranted Suffering) published in the May 20, 2003 Annals of Internal Medicine.
It captures the essential elements of ACP for individuals with eventually fatal chronic disease.
Friday, 14 November 2008
Check Out These CJMRT Articles
This article was first published in the Canadian Journal of Medical Radiation Technology (now the Journal of Medical Imaging and Radiation Sciences ). Visit www.jmirs.org to access current and past issues of JMIRS, and coming soon, CJMRT. 
The Airport Shuttle and the Fundraising Dinner
Advance Care Planning isn't just, or even primarily, about writing down wishes for future healthcare. It's about clear communication amongst patients, family members, friends, and healthcare providers. It's about listening, asking pertinent questions, and respecting each other. It's about goals for living well during health and sickness. It's about what gives life meaning. It's even about communicating worries and preventing medical errors. It's not surprising then, that Advance Care Planning issues can crop up all over the place--sometimes in hotel shuttle buses and sometimes at fundraising dinners.
In my other life, I volunteer with Hope International Development Agency—a grassroots, non-profit organization that focuses on providing basic human necessities (i.e., clean water) for the neediest of the needy in the developing world. Surprisingly, two conversations from the recent round of fundraising dinners in Alberta, BC, and Ontario, actually had Advance Care Planning written all over them.
The Airport Shuttle
She and I were both on the hotel shuttle to the airport—both heading for Toronto; she to go back home, and me to organize a silent auction at two Ontario fundraising dinners. When she asked if this was my full time job, I explained that my day job was teaching communication skills to healthcare providers. Her face lit up, and so began an animated conversation. She works for an insurance company—one that specializes in insuring municipalities and towns. I explained how crucial good communication skills are for healthcare providers and how often a lack of communication skills results in less than optimal outcomes in the healthcare sector. This got her thinking about the situation in her own business. “Wow,” she remarked, “I never thought of communication being a safety issue before, but it really is. We need to hear more about this in our business.” I wonder what she’ll do with this epiphany.
The Fundraising Dinner
She and I were both at the same dinner table; as we chatted she asked me if I was employed by Hope International Development Agency. I explained that I volunteered with Hope, but had my own business teaching communication skills, specifically, skills in facilitating Advance Care Planning conversations, to healthcare providers. Her immediate response was, “I have some physicians who need to attend your classes…want to hear my latest experience?” She proceeded to tell me about her recent ophthalmologist visit. She explained that she had a rare, progressive muscle disease that called for her to see an ophthalmologist on a yearly basis. “I went for my routine exam,” she began, “and minutes into the visit the doctor told me I wouldn’t be able to drive anymore. The visit went on for several minutes, but I heard NOTHING after he told me I wouldn’t be able to drive. I was stunned. All I could do was think about how my daily activities would be curtailed by this restriction. I went home in a daze. A few days later, still upset, I went to see my family physician. She encouraged me to call the ophthalmologist’s office and make a “consultation” appointment—an appointment to discuss the driving restriction and the reasons for it. I never knew this was an option, but I quickly followed her instructions. I’m so glad I did. I explained to him how I had not processed any of his comments after he told me I would not be able to drive. He was immediately concerned and listened intently to what I had to say. ‘Look over at that eye chart,’ he said after I had fully expressed my concerns. ‘Read as many letters as you can.’ He then checked my chart and said, ‘You know what, I think you WILL be able to drive. We can put a special lens in your right eye, and, yes, you’ll be able to drive.’ I walked out of that office on a cloud. I don’t know why he didn’t figure this out during the previous exam, but right now I don’t care. I’m just thrilled that I’ll be able to drive for a while longer. What would have happened if I hadn’t gone back to him to talk about things?”
In my other life, I volunteer with Hope International Development Agency—a grassroots, non-profit organization that focuses on providing basic human necessities (i.e., clean water) for the neediest of the needy in the developing world. Surprisingly, two conversations from the recent round of fundraising dinners in Alberta, BC, and Ontario, actually had Advance Care Planning written all over them.
The Airport Shuttle
She and I were both on the hotel shuttle to the airport—both heading for Toronto; she to go back home, and me to organize a silent auction at two Ontario fundraising dinners. When she asked if this was my full time job, I explained that my day job was teaching communication skills to healthcare providers. Her face lit up, and so began an animated conversation. She works for an insurance company—one that specializes in insuring municipalities and towns. I explained how crucial good communication skills are for healthcare providers and how often a lack of communication skills results in less than optimal outcomes in the healthcare sector. This got her thinking about the situation in her own business. “Wow,” she remarked, “I never thought of communication being a safety issue before, but it really is. We need to hear more about this in our business.” I wonder what she’ll do with this epiphany.
The Fundraising Dinner
She and I were both at the same dinner table; as we chatted she asked me if I was employed by Hope International Development Agency. I explained that I volunteered with Hope, but had my own business teaching communication skills, specifically, skills in facilitating Advance Care Planning conversations, to healthcare providers. Her immediate response was, “I have some physicians who need to attend your classes…want to hear my latest experience?” She proceeded to tell me about her recent ophthalmologist visit. She explained that she had a rare, progressive muscle disease that called for her to see an ophthalmologist on a yearly basis. “I went for my routine exam,” she began, “and minutes into the visit the doctor told me I wouldn’t be able to drive anymore. The visit went on for several minutes, but I heard NOTHING after he told me I wouldn’t be able to drive. I was stunned. All I could do was think about how my daily activities would be curtailed by this restriction. I went home in a daze. A few days later, still upset, I went to see my family physician. She encouraged me to call the ophthalmologist’s office and make a “consultation” appointment—an appointment to discuss the driving restriction and the reasons for it. I never knew this was an option, but I quickly followed her instructions. I’m so glad I did. I explained to him how I had not processed any of his comments after he told me I would not be able to drive. He was immediately concerned and listened intently to what I had to say. ‘Look over at that eye chart,’ he said after I had fully expressed my concerns. ‘Read as many letters as you can.’ He then checked my chart and said, ‘You know what, I think you WILL be able to drive. We can put a special lens in your right eye, and, yes, you’ll be able to drive.’ I walked out of that office on a cloud. I don’t know why he didn’t figure this out during the previous exam, but right now I don’t care. I’m just thrilled that I’ll be able to drive for a while longer. What would have happened if I hadn’t gone back to him to talk about things?”
Monday, 10 November 2008
ACP Podcast Still Relevant
I just found this link to a podcast I participated in a while back:
"Fraser Health is known nationally for its expertise
and award-winning programs in End of Life and
Palliative Care. So it is no surprise that a podcast would feature Sue Grant (former Project Coordinator for Fraser Health's Advance Care Planning initiative) as a recognized authority in Canada in understanding, navigating and
operationalizing Advance Care Planning. Originally
aired in 2006, the podcast is still available."
"Fraser Health is known nationally for its expertise
and award-winning programs in End of Life and
Palliative Care. So it is no surprise that a podcast would feature Sue Grant (former Project Coordinator for Fraser Health's Advance Care Planning initiative) as a recognized authority in Canada in understanding, navigating and
operationalizing Advance Care Planning. Originally
aired in 2006, the podcast is still available."
Tuesday, 4 November 2008
Chronic Illness and Advance Care Planning - What's Taking Us So Long to Get it Right?
It seems like such a simple thing--asking patients and families what they understand and what they hear when their healthcare is discussed. Despite the simplicity, and even ease, with which a practitioner can check out the perspective of a patient or family member, it just isn't done that often. Moreover, comprehensive advance care plans that document agreement among the patient, significant other(s), and the health care team about how to respond to the anticipated complications of a chronic illness, are rare.
Respecting Choices, the best practice Advance Care Planning initiative of Gundersen Lutheran Medical Foundation, has developed an interview tool that promises to dramatically increase patient, family, and healthcare provider satisfaction as it pertains to the management of chronic illness. This interview is delivered by clinicians certified in the Disease Specific/Patient Centered Advance Care Planning (DSPCACP)intervention. Research at Gundersen Lutheran has demonstrated the efficacy of this intervention on a number of levels.
Key features of the interview include:
1. 1.5 hour interview with patient and healthcare agent in outpatient setting
2. Assessment of dyad’s understanding of illness
3. Structured interview that integrates replicable communication techniques
A randomized control study(312 dyads--patients and their family members with end stage renal disease and congestive heart failure)has demonstrated that the DSPCACP significantly increases family members' congruence with patient wishes. One dyadic group received usual advance care planning support and the other received the interview intervention. The DSPCACP group had decreased difficulty in making decisions for future healthcare. There was no difference in anxiety between the two groups. Data are currently being tabulated on the increased likelihood of the patients' wishes being followed at time of death.
I'm excited about what the DSPCACP intervention offers in the field of Advance Care Planning. It's a giant step forward and I believe that its use will change how healthcare providers deliver care to patients (and significant others)with chronic illness.
Way back in 2003, an article by Joanne Lynn and Nathan Goldstein: Advance Care Planning for Fatal Chronic Illness: Avoiding Commonplace Errors and Unwarranted Suffering, chronicles the need for a tool such as the DSPCACP interview. Why, after 5 years, aren't we moving forward faster?
Respecting Choices, the best practice Advance Care Planning initiative of Gundersen Lutheran Medical Foundation, has developed an interview tool that promises to dramatically increase patient, family, and healthcare provider satisfaction as it pertains to the management of chronic illness. This interview is delivered by clinicians certified in the Disease Specific/Patient Centered Advance Care Planning (DSPCACP)intervention. Research at Gundersen Lutheran has demonstrated the efficacy of this intervention on a number of levels.
Key features of the interview include:
1. 1.5 hour interview with patient and healthcare agent in outpatient setting
2. Assessment of dyad’s understanding of illness
3. Structured interview that integrates replicable communication techniques
A randomized control study(312 dyads--patients and their family members with end stage renal disease and congestive heart failure)has demonstrated that the DSPCACP significantly increases family members' congruence with patient wishes. One dyadic group received usual advance care planning support and the other received the interview intervention. The DSPCACP group had decreased difficulty in making decisions for future healthcare. There was no difference in anxiety between the two groups. Data are currently being tabulated on the increased likelihood of the patients' wishes being followed at time of death.
I'm excited about what the DSPCACP intervention offers in the field of Advance Care Planning. It's a giant step forward and I believe that its use will change how healthcare providers deliver care to patients (and significant others)with chronic illness.
Way back in 2003, an article by Joanne Lynn and Nathan Goldstein: Advance Care Planning for Fatal Chronic Illness: Avoiding Commonplace Errors and Unwarranted Suffering, chronicles the need for a tool such as the DSPCACP interview. Why, after 5 years, aren't we moving forward faster?
Wednesday, 22 October 2008
What Holds Us Back from Respecting Patient Choices
Over the past 5 years, I’ve talked with and listened to patients and physicians and family members and friends and social workers and spiritual care practitioners and lawyers and politicians about advance care planning and respecting choices. I suspect that planning in advance, may just be one of the most under-utilized tools in healthcare. One thing I know for sure is: the failure to incorporate an Advance Care Planning system into healthcare is a key reason why healthcare providers are held back from respecting patient choices. Joanne Lynn, MD, Washington Home Center for Palliative Care Studies in Washington, DC says: " ... we contend here that the course of care may be determined largely by preexisting routine, that patient-centered decision-making is often difficult to implement, and that improving the experience of patients might be best achieved by changing institutional and professional routines."
As healthcare providers we believe it’s the right thing to listen with respect, and to honour the wishes of the competent patient. In fact, our codes of ethics state clearly that this is an expectation. So, we talk to our patients, give them materials to read—and even include their families in our discussions. But the truth is, in the heat of the moment, when the patient's condition is deteriorating and anxiety levels are high, we often take the path of least resistance and, instead of following the wishes of the patient while competent, we act on one or more of the following voices:
1.the inner voice that tells us over and over again that there is a chance that the optional intervention the patient doesn’t want could save their life
2.the compelling voice of the nurse on the other end of the phone in the middle of the night wanting to send the dying patient from the nursing home to acute care
3.the anxious voice of the family member who isn’t ready to let go of their loved one
4.the memory voice that reminds us of a past death experience that has gone very wrong
5.the urgent voice that doesn’t have the time to find, read, and corroborate an advance directive
6.the frightened and tired voice of the very sick patient who is now going along with whatever the family says.
These voices are often linked with stories from our past, and they can hold us back from respecting patient choices. The patient, and even some members of their family may have planned for a natural death, but we too often find ourselves listening to anything but the patient’s pre-crisis voice.
So what do we know about advance care planning and respecting patient choices?
1. Surveys in the general and elder populations indicate a positive attitude towards advance directives and an interest in completing them.
2. General agreement among health care providers that advance directives are beneficial and desirable; AMA, CMA and CNA endorse advance directives and recommend assisting patients to draft them.
3. CMA Code of Ethics: Respect the intentions of an incompetent patient as they were expressed (e.g. through an valid advance directive or proxy designation) before the patient became incompetent.
4. CMA, CNA, CHA and Catholic Healthcare Association Joint Statement…every effort should be made to ensure that health care decisions are consistent with [a patient’s] known preferences [which] may be found in an advance directive or may have been communicated orally.
5. Accreditation Canada states that hospitals and health authorities are required to ensure the palliative care team informs the client [patient] both verbally and in writing of their right to establish an advance directive, and explains CPR and the potential need for life-support following resuscitation to the client and family, including the risks and benefits.
6. Canadian Common Law supports advance directives. "It should not be forgotten that every patient has a right to bodily integrity. This encompasses the right to determine what medical procedures will be accepted and the extent to which they will be accepted. Everyone has the right to decide what is to be done to one's own body. This includes the right to be free from medical treatment to which the individual does not consent. This concept of individual autonomy is fundamental to the common law … ."[Ciarlariello v. Schacter (1993), 100 D.L.R. (4th) 609 at 618 (Supreme Court of Canada)]
So…we have all kinds of obligations to respect patient choices.
I suggest that if healthcare providers viewed advance care planning not only as routine care, but as punctuation marks in our paragraphs of care, patients and their families would have more clarity around treatment options, and healthcare providers would have an easier time of respecting patients’ choices.
As healthcare providers we believe it’s the right thing to listen with respect, and to honour the wishes of the competent patient. In fact, our codes of ethics state clearly that this is an expectation. So, we talk to our patients, give them materials to read—and even include their families in our discussions. But the truth is, in the heat of the moment, when the patient's condition is deteriorating and anxiety levels are high, we often take the path of least resistance and, instead of following the wishes of the patient while competent, we act on one or more of the following voices:
1.the inner voice that tells us over and over again that there is a chance that the optional intervention the patient doesn’t want could save their life
2.the compelling voice of the nurse on the other end of the phone in the middle of the night wanting to send the dying patient from the nursing home to acute care
3.the anxious voice of the family member who isn’t ready to let go of their loved one
4.the memory voice that reminds us of a past death experience that has gone very wrong
5.the urgent voice that doesn’t have the time to find, read, and corroborate an advance directive
6.the frightened and tired voice of the very sick patient who is now going along with whatever the family says.
These voices are often linked with stories from our past, and they can hold us back from respecting patient choices. The patient, and even some members of their family may have planned for a natural death, but we too often find ourselves listening to anything but the patient’s pre-crisis voice.
So what do we know about advance care planning and respecting patient choices?
1. Surveys in the general and elder populations indicate a positive attitude towards advance directives and an interest in completing them.
2. General agreement among health care providers that advance directives are beneficial and desirable; AMA, CMA and CNA endorse advance directives and recommend assisting patients to draft them.
3. CMA Code of Ethics: Respect the intentions of an incompetent patient as they were expressed (e.g. through an valid advance directive or proxy designation) before the patient became incompetent.
4. CMA, CNA, CHA and Catholic Healthcare Association Joint Statement…every effort should be made to ensure that health care decisions are consistent with [a patient’s] known preferences [which] may be found in an advance directive or may have been communicated orally.
5. Accreditation Canada states that hospitals and health authorities are required to ensure the palliative care team informs the client [patient] both verbally and in writing of their right to establish an advance directive, and explains CPR and the potential need for life-support following resuscitation to the client and family, including the risks and benefits.
6. Canadian Common Law supports advance directives. "It should not be forgotten that every patient has a right to bodily integrity. This encompasses the right to determine what medical procedures will be accepted and the extent to which they will be accepted. Everyone has the right to decide what is to be done to one's own body. This includes the right to be free from medical treatment to which the individual does not consent. This concept of individual autonomy is fundamental to the common law … ."[Ciarlariello v. Schacter (1993), 100 D.L.R. (4th) 609 at 618 (Supreme Court of Canada)]
So…we have all kinds of obligations to respect patient choices.
I suggest that if healthcare providers viewed advance care planning not only as routine care, but as punctuation marks in our paragraphs of care, patients and their families would have more clarity around treatment options, and healthcare providers would have an easier time of respecting patients’ choices.
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