Health Care Consent and Advance Care...
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Health Care Consent and Advance Care Planning
Transcript of Health Care Consent and Advance Care...
Health Care Consent and Advance Care Planning
Different Perspectives on Life
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We are concern about living well till we die.
Central West Palliative Care Network Hospice palliative care is whole-person health care that aims to
relieve suffering and improve the quality of living and dying.
World Health Organization (WHO) Palliative care is an approach that improves the quality of life of
patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.
Definitions
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National Consensus – Palliative: Refers to an approach to, as well as a philosophy of, care. A palliative approach to care is appropriate for any individual and/or family member living with a life-limiting illness at any time. Should not be used as a label for nor as a category of patients. A person may have palliative care needs, or they may receive a palliative approach to care. Is not a phase or stage in the illness trajectory, nor a diagnosis Tips for Facilitator: Discuss about the meaning of Quality of life: its the standard of health, comfort, and happiness experienced by an individual Quality of life is different for different people. Focus is on early identification so that crises can be prevented and patient can be supported through out the disease trajectory.
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The Mortality Rate of Humans in the World
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Everyone dies one day
How Can Palliative Care Help?
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Everyone dies one day https://www.youtube.com/watch?v=lDHhg76tMHc
The Role of Hospice Palliative Care During Illness
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A Model to Guide to Hospice Palliative Care(2013), CHPCA
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OPCN model for palliative care
Why Provide a Palliative Approach to Care?
Among this population
with multiple chronic
diseases, demand for
acute services, specialty care
and clinical interventions is increasing
BY THE NUMBERS
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This slides mentions the percentage of the population in Central West LHIN that suffers from chronic illness. At some point they will all need palliative care.
Advance Care Planning and Health Care Consent
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This is Gramma. She is 75 years old.
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This is Gramma, she is 75 years old , Gramma has a history of breast cancer, her kidneys are also not functioning very well. She also has the early signs of dementia. She is living with her son Martin, her daughter-in-law Helen and the kids.
Sammy, 21Niki, 25 Sarah, 23
Nitasha, 50 Martin, 53
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She lives with Martin her son, who is 54, Martin’s wife Natasha 50 and 3 kids Niki is 25, Sarah 23 and Sammy is 21
Son, I’d like to talk to you about my wishes. DENIAL:
You’re going to be fine, Mom. We don’t need to talk about this now!
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Gramma says “I’d like to talk to you about my wishes, values and beliefs in regards to what I want for future care to guide you to make treatment decisions on my behalf, if I am ever mentally incapable of making them. I know that this is part of “Advance Care Planning” and also know that I can change my mind at any time.” Martin said to her “You’re going to be fine Mom, we don’t need to talk about this now. Gramma says “I still think it is important to talk about”.
Speak Up Advance Care Planning Conversations
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https://www.youtube.com/watch?v=_6gFzCiMnlg
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Gramma went to an Advance Care Planning session at the Seniors Centre and saw a really good video. Everyone got a copy of it and she wanted to show a copy to Martin. Image hyperlinks to: https://www.youtube.com/watch?v=_6gFzCiMnlg
Gramma’s Wishes No CPR No feeding
tubes Pain free Not to die in
a hospital Listening to
her religious scripture when she’s dying
And, and, and…
I want…I don’t want…I really like…I don’t like…
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Later she had conversion with Susie about her beliefs, values and wishes. As a health care provider it is important to let your clients know that ACP a conversation is NOT about making decisions or obtaining consent. For Example: Gramma would like to die at home and if that is not possible then a LTC Home is OK. She would like medications to keep her comfortable and she does not want CPR. Decision making by the SDM in obtaining consent ONLY comes into play when the patient is not mentally capable. Remember only capable patient can participate in the process of ACP.
Gramma just did someAdvance Care Planning!
Gramma is now living in a long-term care home.
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A few years later, Gramma’s health deteriorates and managing at home has become too difficult. She is getting ready to move into long-term care home.
Gramma fills in many forms, including a“DNRC” form
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CPR Decision Aid
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Image hyperlinks to: https://www.youtube.com/watch?v=31kdjcsLUjE 3:19 – 4:13 Consent must always must be obtained at the time that a treatment is proposed. (Except in an emergency, which we will discuss a little later). In the LTC admission process, they ask Gramma about her wishes for care and whether her wishes includes having CPR. Gramma says: “Of course I want to live.” The nurses wanted to make sure that she had a good understanding about what CPR is, so they invite her to watch a video on CPR. The video includes statistics on survival in the hospital after a witnessed arrest, including: 18% of health people will survive and, of that 18%, 5% will be discharged to a nursing home Only 10% of those with chronic conditions will survive Only 6% of older people survive After watching the video, Gramma says: “Wow, so it isn’t like how it’s portrayed on TV?” Gramma updates her list of things she doesn’t want. “I absolutely do not want CPR. I just want nature to run its course.”
Gramma develops a fever
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Several weeks later, Gramma develops a fever and appears to have a Urinary Tract Infection.
Gramma’s physician proposes an antibiotic
treatment.
Who should he ask for consent for treatment?
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Which of the following is correct?
The nurse/physician talks to Martin about treatment options available, as Gramma is likely not able to understand due to her dementia.
The nurse/physician talks to Gramma first about treatment options available, to assess if she understands and appreciates them.
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The nurse/physician talk to Gramma first about treatment options available and assess if she is able to understands what is being said and if she appreciates the consequences of her decision or lack of decision. Is this correct? YES (Correct)
What is Health Care Consent?
Informed decisions about personal and health care, which could include admission to long-term care and personal care support:o Health Care Provider (HCP) MUST provide the patient or
Substitute Decision Maker (SDM) with all treatment options, risks, benefits, side effects, alternatives, and impact of decision.
HCP obtains consent from mentally capable personor
SDM provides informed consent if patient is not mentally capable:o Capacity is determined by the HCP and may be decision-specific
since capacity can fluctuateo Consent may include a “plan of care” or “goals of care” that are
related to patient’s CURRENT health condition22
The nurse talks to Gramma first about treatment options.
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The nurse explains the antibiotic treatment option to Gramma to see if she is able to understand the treatment that has been explained to her AND appreciate the consequences of accepting and/or refusing the proposed treatment (her capacity). The nurse knows that the elements of consent are: Must relate to the treatment Must be informed Must be given voluntarily Must not be obtained through misrepresentation or fraud The nurse also explains to Gramma the necessary information that must be part of the informed consent, which includes: Nature of the treatment Expected benefits Material risks (meaning what are the usual most common risks) Material side effects Alternative course of action Likely consequences of not having the treatment The nurse is satisfied that Gramma has the capacity to consent to treatment. She asks Gramma for consent for antibiotics. She also asks if Gramma if it would okay to let Martin to know the plan of treatment. Gramma agrees and starts a course of antibiotics.
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The nurse notices that Gramma’s behavior has changed and suspects she may have delirium. Gramma is fidgeting in her room, is throwing all her clothing on the floor, and is pacing and mumbling to herself. The nurse comes in and asks Gramma if she is okay. Gramma says: “I see spiders crawling up the wall. I don’t want them to come and get me.” The nurse asks” “Would you feel safer if we went outside of your room into a quiet area?” Gramma says: “Yes please.”
Who Can Provide Consent?
A patient is considered mentally capable of providing inform consent when:
She/he is able to understand the information
and…
She/he can appreciate the consequences of the decision.
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????
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Nurse: “Do you have any pain?” Gramma: “Yup. My belly hurts, my belly hurts.” Nurse: “You have been fighting an infection, and the doctor believes that the antibiotics may not be working. I would like to talk to you about this.” Gramma: “I’m infected? I think I should just pick up my clothes before the spiders get them, and that will make me feel better.” (She is unable to understand the medical problem) Nurse: “There are some new antibiotics that may help you. Do you know what antibiotics do?” Gramma: “I know all about that. You give me a can of soup and I’ll feel better.” (She is unable to understand proposed treatment) Nurse: “Do you know what could happen if you didn’t have treatment for your infection?” Gramma: “I would lose my teeth.” (She is unable to understand the consequences) The nurse and physician soon realize that Gramma is mentally incapable of consenting to starting a new treatment.
CONSENT… Who should he get it from?
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Ask: What do you do next? Gramma is obviously not mentally capable to consent to treatment because she is not able to understand the information given to her and does not appreciate the consequences of the decision, or lack of decision. Who will they get consent from? Anticipated Response: The Substitute Decision Maker The only exception is in an emergency In an emergency, if the person is not capable and there is no SDM(s) available, the Health Care Provider must follow the known wishes of the person or, in the absence of known wishes, they must act in the person’s best interest Defined in the act as – Emergency means the person is experiencing severe suffering or is at risk of serious bodily harm
Confirm automatic SDM(s)
Choose someone else and Prepare a Power of Attorney for Personal Care document
Substitute Decision Maker Hierarchy
Wahl Elder Law 201728
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The Health Care Consent Act has a ranked hierarchy that lists Substitute Decision Maker(s) (SDMs). This is the order in which the health care providers will obtain consent – the highest ranked person is the Court appointed and lowest is the PGT. You will notice that the yellow section are legally appointed SDMs and the green are automatic family member SDMs. The PGT are the last on the list and they really don’t like making decisions because they really don’t know the person well. Ask: What is a Substitute Decision Maker(s) and what is their role? Anticipated Response It’s the person(s) who will provide consent or refusal of consent for care and treatments for a patient if the patient is not mentally capable Only when a person is deemed incapable of making a treatment or care decision the responsibility for consent is given to the SDM(s) Personal care decisions include: medical treatment, nutrition, shelter, clothing, hygiene, and safety The SDM must be 16 years old or older unless they are the parent of the incapable child i.e. a young mom (under 16)with a baby, willing and able to act as the SDM, not prohibited by a court order, and mentally capable themselves The SDM(s) makes decisions by trying to make the same personal care choices that the person if capable would make in that situation. Anticipated Response SDMs are legally obligated to make decisions based on the person’s values and beliefs and not on the SDMs values and beliefs. If the SDM does not know the persons wishes are then he/she must base their decision on the person’s best interest. Best Interest is: whether the treatment is likely to improve the persons condition or well being whether the treatment with prevent further deterioration whether it will reduce the extent to which, or rate at which, the persons condition or � well being is likely to deteriorate the expected benefits of one treatment versus another treatment If concerns arise that SDMs are not making decisions based on the person’s previously expressed wishes or a decision is not in the person’s best interest, the Health Care Provider may apply to the Consent and Capacity Board. If there is disagreement between SDM(s) and team after robust attempts to resolve the situation, a Health Care Provider has two choices: Involve the Public Guardian and Trustee to make the decision, or Involve the Consent and Capacity Board to appoint one person to make the decision In Ontario, everyone automatically has a SDM ( this list is on page 7 of the “Speakup book”).
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The physician asks Martin if he knows if his mother completed a POA for Personal Care. He responds with a no. The physician confirms with Martin that, according to the Hierarchy of SDM(s), he is her automatic SDM. The physician explains to Martin the benefits, risks and side effects of the proposed new treatment. Martin consents on behalf of his mother, who at this time is mentally incapable of making an informed decision.
Palliative Myths
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Image hyperlinks to: https://www.youtube.com/watch?v=HvguLSL-AJU
Gramma needs dialysis.
Who does the nurse/physician get consent from?
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A few months pass and Gramma’s kidneys start to fail – she will now require dialysis. Ask: Should the physician call Martin to get consent? NO Even though Gramma has a diagnosis of mild dementia, it does not mean she is incapable of making decisions or answering questions about her health. A diagnosis itself does not reflect mental capacity. Just because she was mentally incapable to make treatment decisions when she had delirium, doesn’t mean she is still mentally incapable to give consent to treatment now. Mental capacity can fluctuate, is time specific, and is always assessed in the here and now. The Nurse/Physician must first speak to Gramma about dialysis. The physician explains the benefits, risks, side effects and alternatives to treatment and what would happen if she didn’t get it. Gramma gives consent and would like Martin to know about the treatment plan and her goals for care. Gramma goes to dialysis 3x/week
After a month, Gramma decides to stop dialysis.
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After a month she says: “I don’t want to do this anymore. I’ve had a good life and I want to live the rest of my days without dialysis. Just keep me comfortable and pain free.” Martin begs his mother: “You can’t do this to us!” This can be a very difficult and emotional time when your loved one makes a decision you do not agree with, especially if the outcome may result in a reduced life expectancy. Ask: Do you think it is okay to coerce someone if you disagree with their decision? Absolutely not! We may not always agree with decisions, but it is the right of every patient/resident to make their own decisions if they are mentally capable. Even bad decisions, ones that perhaps are not what you or I might decide.
Advance Care Planning and Goals of Care
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Goals of Care is related to a person’s present condition
You are capable of making your own health care decisions!
I understand and appreciate the consequences of not having dialysis.
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The physician has a discussion with Gramma to assess whether she fully understands and appreciates not having dialysis and the consequences of her decision. The physician offers more information for Gramma to make an informed decision. As Gramma’s “automatic SDM,” Martin furious and says: “She has dementia. She is not mentally capable of making these types of decisions. I’m her SDM, I make the decisions and she must go to dialysis.” The health care team reminds Martin that he is not legally able to make treatment decisions for his mother unless she is mentally incapable. She is now mentally capable to make this decision for this treatment option because she understands and appreciates the consequences of her decision. Gramma knows she will die if she doesn’t have dialysis.
The Consent and Capacity Board is called in to review Gramma’s case.
Does she appreciate?
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Martin continues to question his mom’s mental capacity even after several unsuccessful family conferences with the LTC Home. Martin requests the Consent and Capacity Board to come in and review his mother’s capacity. The Consent and Capacity Board is an independent group that holds hearings to consider a review of an individual’s capacity to make decisions about health treatment amongst other duties. The board deems Gramma mentally capable of discontinuing dialysis.
Gramma asks Niki to be her Substitute Decision Maker; Niki agrees
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Gramma realizes that Martin doesn’t agree with her decision-making and what she values about quality of life. She is worried that when she becomes mentally incapable of making health care decisions, Martin will not honor her wishes. She decides to ask her granddaughter to be her POA PC. Susie agrees and asks Gramma if she would like anyone else to also be POA PC? “You know, Gramma, you can choose one or more people to be your SDM. You can choose them to act jointly (together) or severally (separately). You can also choose alternate SDM(S) as a backup.” Gramma would like just Susie to be her POA PC. The POA PC is a form where you appoint your SDM(s) to be your decision maker. Gramma completes the POA PC document and it is placed in her chart.
Gramma’s Wishes
No CPR
No feeding tubes
Pain free
Not to die in a hospital
Religious scripture when she’s dying
And, and, and…
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Gramma talks to Susie about her wishes for future health care. Susie responds: “I understand, Gramma. I know they will ask me for consent for treatment on any/all issues regarding your care, but they will only come to me if you are not mentally capable of making decisions for yourself. I promise to honor your wishes, Gramma: you don’t want CPR, you don’t want a feeding tube at any time for any reason, you want to be comfortable and pain free, you want a natural death, and wish to die in your LTC home bed.” Gramma also says: “Susie, I would like you to play my religious scripture recording on the bedside when I’m in my last days.” Susie says: “Thank you for telling me what your wishes are, Gramma. Knowing what you want really want alleviates the stress and anxiety/pressure of making those decisions for you when you can’t tell me.” Gramma says: “I feel like I’m in control now, guiding my health care and what my end-of-life journey will look like when I can’t speak for myself. It’s like having an insurance policy.” Susie says: “Gramma, remember when you and I talked about your beliefs, values and wishes? That was part of the Advance Care Planning process.” Gramma says: “But I didn’t write anything down.” Susie says: “You don’t have to. Having the conversation is enough. Gramma, as life changes, you can always change your mind. We just need to continue to have these types of conversations.”
Gramma just did someAdvance Care Planning!
Gramma dies peacefully with her religious scripture recording playing in the background.
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Gramma dies peacefully in her LTC home bed, with her religious scripture playing on the radio in the background. Six months later Helen succumbs to ALS.
How do I want to be cared for if I become sick, and who will make decisions for me when I’m not mentally capable of making them?
I want… Hmm…
I don’t know what I want…
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The kids meet to support each other through Gramma’s death. They know that there is a family history of kidney failure and want to discuss the “what ifs” with their health. They believe it’s a great opportunity to share what is important to them for future health and personal care wishes and who will make decisions on their behalf when they are not mentally capable. Susie doesn’t want any heroics. She says: “I never want to be hooked up to any machines. I don’t want a feeding tube or to be ventilated like Mom was. I don’t want any unnecessary surgeries, blood transfusions, dialysis etc. Mom had a treatment plan because of her ALS, she knew what to expect. I can only talk about my values, beliefs and what quality of life means to me. I value my independence, my physical strength and dignity. You know my life is adventurous. I like to travel, skydive, rock climb etc. I don’t want to live if I’m bed-bound and dependent on others and unable to communicate.” Sammy intervenes: “Whoa, whoa…wait a minute! No blood transfusions? What if you’re in a car accident and a blood transfusion will save you?” Susie says: “You’re right. If I’m temporarily put in ICU after a car accident and the medical team believes I can recover, of course I would definitely want to have to have a blood transfusion. If I needed to be intubated from an anaphylaxis shock, and I would recover, of course I would want these types of interventions. Interventions such a surgery to control pain (if I broke something), or antibiotics to relieve and infection, or medication to help with pain and maybe some medications to help me breathe better if I’m struggling…these are all interventions that I would want. What I’m saying is, only when there is no cure, or no possibility of full recovery that I don’t want any life-sustaining interventions.”
Being able to communicate!
Able to taste food!
To live independently! To recognize important people in
my life
To be pain free!
To die at home!
No feeding tubes!
No ICU
Examples of Wishes
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Here is an example of some wishes�
Advance Care Planning StepsThink:What makes life meaningful? What’s important to you?
Learn: Familiarize yourself with important relevant and medical terms. What might improve your quality of life or prolong life?
Explore: Who will speak on your behalf and make future health and personal care decisions if you were not mentally capable to give or refuse consent for treatment? Who will honour your wishes?
Consider:Who is your automatic SDM? Is this the person I can trust to follow my wishes? Do I need or want to complete a Power of Attorney for Personal Care?
Communicate:Communicate with your SDM(s) your beliefs, values and wishes. Review and revisit them regularly to help your SDM(s) make decisions on your behalf if you are not capable to do so yourself.
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www.speakupontario.ca43
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I would encourage you look through the Speak Up book and/or look at the website (www.speakupontario.ca). Think about having ACP conversations and use this as a tool to communicate your wishes with your SDM, physician, family etc. Speak Up has an interactive workbook specific to Ontario, with specific information about advance care planning and deciding on a substitute decision maker in Ontario. It is meant to help you work through the steps of advance care planning. The workbook describes the steps, provides questions to help reflect on values and wishes and includes space to record such things as wishes, information about your substitute decision maker(s) and information about other important documents. There are fillable versions you can do online and email yourself and your SDM.
Resources
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Central West Palliative Care Network website: www.cwpcn.ca
Central West Healthlinewww.centralwesthealthline.ca
Resources for:o Patientso Caregiverso Health Care Professionals
Bethell Hospice
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Residential Care Program
Community Support Programo Bereavement Supporto Palliative Supporto In-home Visitingo Spiritual Careo Integrated Wellness Program
Volunteer Program – 200 +
o Child and Youth Bereavemento Caregiver Café & Movieo Journaling through Griefo Death Café
Heart House Hospice
Heart House Hospice is a community hospice that provides in-home support to families living with dying, death and grief. Supports include: Hospice Counselling H.U.U.G. (Help Us Understand Grief) Children’s Program (one-on-
one, monthly events for bereaved) In-office and in-home Complementary Therapies (C.T.) In-home volunteers (respite, companioning, C.T.) Weekly day hospice and wellness programs Education and training programs Spiritual care (one-on-one) Bereavement programs (one-on-one or group)
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Hospice Dufferin
Services include: Social worker for counselling (palliative, bereavement, caregivers) Volunteer visiting Health care system and financial navigating supports
Programs include: Crafting for wellness Meet and greet social program Art therapy Therapeutic yoga
Visiting hospice serving Dufferin County
Look good, feel better G.R.I.E.F. Bereavement Group Night Out – caregivers and patients Tai Chi
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Dorothy Ley Hospice
Community Support Program Services in the home and at our hospice centre to address physical, mental,
emotional and spiritual health Focus is on individual’s quality of life and family support Includes: wellness therapies, day service programs, spiritual care, volunteer
(respite) and bereavement support Help with advance care planning, system navigation, advocacy
Residential Care Program Provided to individuals in the last weeks of life A home-like environment (10 private suites) where we provide 24/7 nursing
and medical support (comfort care) to individuals at end of life whose care needs exceed the capacity of the care providers to be managed at home
Care is ‘person-centred’ and is extended to the family
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Hospice Vaughan
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Canadian Virtual Hospice
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Questions?
