Protecting Your Dying Family Member

by David Nitkin | Categories: Family Health Advice | Tags: ,

Issue

As COVID-19 galvanizes our fears and frustrations, a growing number of families are very concerned about protecting the rights of their family members to ensure that their treatment wishes are protected. Many are aware of media discussions about triage and rationing care, and want reassurance that they are doing everything they can to:

  • (a) protect loved ones,
  • (b) promote life extension where possible, and
  • (c) ensure death with dignity.

In response to explicit requests from several blog readers, we have consulted with chaplains, lawyers, and palliative care workers to summarize their expert advice as personal guidance on this subject.

Critical Care Checklist Questions

Critical care decisions are fraught with legal and moral dimensions the answers to which  you should know about:

1. Personal Care Decisions

Powers of attorney for personal care have been part of the landscape of informed consent, since 1994 but they are much more important since COVID-19. Chantal Perrot, a Toronto physician and psychotherapist, is quoted as saying that she’s seen an increase in the number of people wanting to make clear their end-of-life care decisions since the coronavirus pandemic reached North America. And she encourages more people to think about it, especially now.

Ontario residents, as well as those in most other provinces, can draft power of attorney for personal care (POA) forms themselves. They just have to be handwritten and signed by two independent witnesses. You may want professional advice on the wording. Apparently estate litigators love people who do their own POAs, perversely because lots of people mess them up.

Tara Steinberg, a Toronto Lawyer, who has created hundreds of Health-Care Directives and Wills for clients understands the stress associated with making end of life decisions, comments, “Many people put off creating these documents because they do not want to face their mortality. While a lawyer cannot make the decisions for their clients, they can walk them through the process and give them the peace of mind that the document will ensure that their wishes are followed”.

End-of-life care plans or advanced care plans can also be listed as personal or health directives. There are a number of online templates of forms that can be used for guidance when setting out end-of-life care plans. Perrot suggests writing out decisions and bringing them to a lawyer to discuss with, then storing them with wills and other important documents – and letting your Attorney and the Executors of your Will know where they are.

While the global pandemic has some Canadians more focused on such decisions, Perrot recommends we should have them ready at any time, in case of any emergency. She says people need to think about a number of scenarios when drafting their end-of-life care instructions, including what kinds of medical interventions they want, and under what circumstances. “How many of these decisions you want to make” says Steinberg “is really a personal decision. Some clients want to draft an extensive Health-Care Directive, that allows them to state their wishes in almost every medical eventuality, while others have a very close person to nominate as a substitute decision maker and a one-line Power of Attorney for Personal Care, which is all they need.”

2. Refusal of Treatment

Some advanced treatment methods for COVID-19 symptoms can be especially tough on the body, including mechanical ventilators, and severe coronavirus cases may require even more interventions. In cases where patients’ health and recovery prospects continue to worsen, families have to make difficult decisions about when to take their loved ones off of life support, using their previously discussed wishes as guidance—if they are known.

“If you’re lying in a hospital bed and unable to speak for yourself, you want someone who knows you well enough, and knows what you would want, to be making those decisions,” Perrot said. “You don’t want some stranger, some emergency room doctor or ICU doctor who doesn’t know your values, your principles, and what’s important to you in life making that call.”

Families and patients cannot demand a treatment. There are complex distinctions between “not offering” a treatment and “withdrawing / withholding” a treatment. It is important to understand that doctors DO NOT make that call to take someone off life support. They need consent from the patient or, where that isn’t possible, from an authorized  family member, or change code status or withdraw life support. Triage protocols mentioned in a previous blog Rethinking End of Life or Futile Care (June 2) suggest that in a crisis like this one, possible new rationing care standards could arise.

3. Substitute Decision-Making

One benefit of the pandemic may be heightened awareness of the importance of identifying one’s preferred substitute decision-maker(s) and expressing “end of life” wishes. If your family member is incapacitated, your end-of-life care plan should identify a substitute decision-maker. The title for your substitute decision-maker (SDM) may differ from province to province, according to a Government of Canada website.

“Some family members might want medical intervention at any cost. Some would say ‘I don’t care, being alive is more important to me than anything else,”‘ says Perrot, who is a board member with the organization Dying With Dignity Canada, a charity that advocates for end-of-life rights including assisted dying. “Others would say ‘it’s quality of life and if I can’t expect to get off this ventilator and live life the way I was before then, so I don’t want interventions.’ And then, most of us are going to be right in between.”

Mark Handelman, a lawyer with a Master’s Degree in bioethics, points out that the document by itself is not adequate. The SDMs need to be “empowered” to make these difficult decisions. Telling your Attorneys or other substitute decision-makers yourself what your care wishes are is part of the process of ensuring respect for your wishes. He remembers one case in which the dying patient’s daughter said, “I don’t care what that piece of paper says, my Dad never told me to authorize the doctors to kill him.”

“You may be surprised at how little your substitute decision maker knows your wishes”, says Tara Steinberg, who stresses having those difficult discussions while you prepare your health-care directive, if not before. She recalls a situation where married substitute decision makers reviewed their personal end-of-life decisions and in every new situation, the husband would say, “in that case you want intervention, right?” And the wife would invariably reply “absolutely not, you pull the plug!”

4. Clarity about Your End-of-Care Decision

Handelman, now a Member of Ontario’s Consent and Capacity Board, (which among other responsibilities adjudicates end-of-life treatment disputes), offers this provision to express treatment wishes at end of life:

“Death is as much a reality as birth, growth, maturity and old age.  It is the one certainty of life. I recognize this. Therefore, while I am incapable, should a situation arise where my attending physician determines that I will not recover from a disability and that my death, but for medical intervention would be imminent, and that I am suffering, I DIRECT MY ATTORNEY to permit me the dignity of a peaceful passing. I do not wish to be kept alive by artificial or heroic measures that would only serve to prolong my dying process, but I rather wish to die with dignity and in comfort.  In that situation, I wish for treatments that will allow me to die peacefully even though they may abbreviate the dying process, resulting in a hastening of my death.” Handelman notes that some people wish to remove the phrase, “and that I am suffering.” 

Handelman also reminds us that, unlike a Will, there can be multiple copies of a Power of Attorney and it isn’t a bad idea to give one to your doctor, another to your lawyer and a copy to each named Attorney. But, you need to remember who got them so that if, subsequently you change your mind about the wishes you expressed or the people you want to make your decisions when you are incapable, you can “recall” the now revoked document.

Handleman reminds us that treatment wishes can be expressed orally, electronically or in any other written form and that later wishes prevail over prior wishes. As well, he points out that to be a valid expression of wishes, the person has to be capable at the time they are expressed of making the treatment decisions to which the wishes relate. For him personally, the Power of Attorney for Personal Care is more important than his Last Will and Testament: “I’m more concerned about ‘getting to dead’ than I am about what happens to my worldly wealth after I’m gone.”

5. Struggles between Physicians and Families

What happens when the doctor and family members have different opinions about end-of-life care for someone who is dying? Sometimes medical staff, the patient, and family members disagree about a medical care decision. This can be especially problematic when the dying person can’t tell the doctors what kind of end-of-life care he or she wants. For example, the family might want more active treatment, like chemotherapy, than the doctor thinks will be helpful.  COVID-19 inspires dread even in a family accepting the fragility of life of a health-compromised family member.

Physicians will usually respect the end-of-life care protocols as outlined by a power of attorney. “If you have a power of attorney document and you say in the document: ‘This is what I want, I don’t want any heroic measures.’ OK, doctors will to a large extent follow it,” one lawyer said. “There have been some court cases about whether that’s specific enough. Handelman stresses that the wishes expressed are NOT consent to treatment. The wishes expressed are guides to the SDMs and if there is a question about what they mean or if they apply to the circumstances, The Consent and Capacity Board has authority to interpret them.  But, by and large in this time period, if there’s a power of attorney, they will go with the consent that is given in accordance with those wishes. People can always change or add to their own end-of-life care decision documents, as long as they are of sound mind when doing so.”

Sometimes, the whole family wants to be involved in every decision. Maybe that is the family’s cultural tradition. Or, maybe the person dying did not pick one person to make health-care choices before becoming unable to do so. If the family can’t agree about the care plan, a decision-maker, or even a spokesperson, they might consider a mediator, someone trained to bring people with different opinions to a common decision. In worst case scenarios, as discussed in EthicScan Blog “Rethinking End of Life or Futile Care” (June 2), there can be an ugly hearing in the courts featuring feuding family members or conflicts between physicians and families.  Mark notes,  “In Ontario, such cases go to the Consent and Capacity Board, and the courts shun them.”

According to Mark Handelman, “if the dying person didn’t identify an Attorney for Personal Care, the hierarchy of substitute decision makers (SDMs) in s. 20 Health Care Consent Act governs.  Note 20(6), which provides that if the highest ranking SDMs disagree among themselves, Public Guardian and Trustee becomes SDM. As much as I respect their care in such decisions, who really wants a civil servant making the decision.”

Overview: A Critical Care Checklist

There are a number of strategies that might help your family dealing with “new normal” issues surrounding the end-of-life care. You might make every effort to:

  • Discuss your personal and family traditions with your health-care team doctors and nurses. If there are religious or cultural customs surrounding death that are important to you, make sure to tell your critical-care providers, family and community health-care providers.
  • Make every effort to ensure that there is an updated, advance directive governing care guidelines for someone who is health-compromised and/or dying.
  • Speak with a Lawyer about ensuring your documents, self-created or otherwise meet your needs and are properly executed, so they cannot be challenged.
  • Make sure you understand how the available medical options presented by the health-care team fit into your family’s desires for end-of-life care.
  • Have someone with you when discussing these issues with medical staff. Having someone take notes or remember details can be very helpful. If you are unclear about something you are told, don’t be afraid to ask the doctor or nurse to repeat it or to say it another way that does make sense to you.
  • Keep asking questions until you have all the information you need to make decisions. Make sure you know how to contact a member of the medical team if you have a question or if the dying person needs something.
  • As soon as it is clear that the patient is nearing the end of life, the family should try to discuss with the medical team which end-of-life care approach they want for their family member. That way, decision making for crucial situations can be planned and may feel less rushed

Further Resources:

Dying With Dignity- Make Your Plan:
https://www.dyingwithdignity.ca/make_your_plan

CTV News – Planning end-of-life care? Here’s what to consider during COVID-19:
https://www.ctvnews.ca/health/coronavirus/planning-end-of-life-care-here-s-what-to-consider-during-covid-19-1.4909016

EthicScan Blog – Rationing Who Gets Care:
http://ethicscan.ca/blog/2020/04/01/rationing-who-gets-care/

EthicScan Blog – Rethinking End of Life or Futile Care:
http://ethicscan.ca/blog/2020/06/02/rethinking-end-of-life-or-futile-care/

Tara Steinberg – Attorney At Law:
http://tarasteinberg.ca/

David Nitkin
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