palliative care

We must plan for our death

While our ultimate death is a certainty, when and how we will die is unknowable. And though death is inevitable, it remains a taboo subject for most. None of us knows what the future will bring. It is better to be prepared, so that if you become unable to make medical care decisions, your designated family members and healthcare providers, if you have talked to them, will have the knowledge and confidence to make those decisions for you.

As long as you are capable of understanding and communicating effectively with your doctor, nurse or other healthcare provider, you will be asked to make your own healthcare treatment decisions. But a serious accident or illness can result in you being incapable of making your own healthcare decisions at the time care is needed. This is why thinking about your preferences and talking to your future decision-makers now is so important. Making an advance care plan is a choice that will help alleviate some of the stress your family and friends could face if they are required to make important decisions for you, including who, exactly, you want your doctor to approach to learn about your wishes.

Advance care planning begins by thinking about your beliefs, values and wishes regarding future healthcare treatment and talking about them with selected family members or friends, as well as your doctor. When people you trust know what is important to you, it will be easier for them to make treatment decisions on your behalf.

Healthcare providers will always offer medically appropriate healthcare based on clinical assessment. They will want to ensure that any symptoms like pain, dizziness, nausea, bleeding or infection are understood and addressed. As long as you can understand and communicate, your healthcare provider will explain the medically appropriate care best for you, including any risks, benefits or alternatives. They will also ask if you have any questions and if you wish to accept or refuse the proposed healthcare treatment.

Some of the hardest decisions deal with the use of life support and life-prolonging medical interventions. These can include a ventilator to help with breathing, tube feeding, kidney dialysis, or CPR to restart the heart and lungs. If you were to have a life-threatening illness or injury, would you want to accept or refuse CPR? All, some, or no life support or life-prolonging medical interventions? A trial period of life support and life-prolonging medical interventions, allowing a natural death to occur if your condition is not improving?

Your advance care plan should at a minimum include these three things:

Having conversations with selected family members, friends, your family doctor and, if applicable, your spiritual leader, about your beliefs, your values and your wishes.
Writing down your beliefs, values and wishes for future healthcare treatment.
Writing down the contact information for the people who qualify to be on your temporary substitute decision-maker list (see below), or, if you prefer, the contact information for the representative you have chosen and named in an enhanced representation agreement, which is the one that allows you to name a person to make personal-care decisions and some healthcare decisions, including decisions to accept or refuse life support or life-prolonging medical interventions for you. (If you choose to have a representative agreement, I recommend you seek legal advice).

Bear in mind that your health and personal circumstances will change over time. As long as you are capable, you may change or cancel your advance care plan at any time and for any reason. Be sure to notify your doctor and your family members/friends of all changes you make.

Palliative care

When thinking about what to cover in your advance care plan, you might want to expressly include your wish to receive palliative care if you are suffering from a serious illness or condition. Palliative care is specialized medical care that focuses on providing patients with relief from the symptoms, pain and stress of a serious illness, whatever the diagnosis. The goal of palliative care is not to prolong life, nor to shorten it. The goal is to improve quality of life for both the patient and the family, and can be provided in a variety of locations, including the patient’s home, in a hospice, in a residential care facility or in a hospital.

Palliative care is provided by a team of doctors, nurses and other specialists who work with a patient’s other doctors to provide an extra layer of support. While often associated with end-of-life situations, palliative care is appropriate at any age and at any stage in a serious illness and can be provided alongside other appropriate treatments.

Many people choose to stay at home right to the end of their lives while receiving in-home palliative care from specialized healthcare providers. But if you are in the last few months of your life and feel that you are no longer able to manage at home, a hospice may be a good option for you. Hospices are meant to feel more like a home than a hospital. They are designed and furnished to provide a peaceful, homelike environment for you and your family while you receive end-of-life palliative care.

For more information on the delivery of palliative care in each of these settings, search the B.C. Health Ministry website or contact your local health authority.

Medical assistance in dying

Medical assistance in dying (MAiD) was made legal in Canada in 2016. It provides eligible patients who are experiencing intolerable suffering due to a grievous and incurable medical condition the option to end their life with the assistance of a doctor or nurse practitioner.

If your beliefs and values allow you to consider MAiD in the face of intolerable suffering, you should start by speaking with your doctor or your local health authority. For a variety of reasons, not all doctors will provide MAiD, and no one is required by law to do so. For some, MAiD may conflict with their personal beliefs or professional ethics. However, a patient can expect to be provided with information on how to access this service. Healthcare providers must not discriminate against patients with beliefs or values different from their own, and must provide an effective transfer of care to another healthcare professional who does offer MAiD.

To be eligible for MAiD, a patient must meet all of the following criteria:

be registered under B.C. Medical Services Plan
be at least 18 years old and capable of making healthcare decisions
have made a voluntary request for medical assistance in dying that was not made under any external pressure. This request must be in writing and signed and dated in front of two independent witnesses
have given informed consent after having been informed of the other means that are available to relieve their suffering, including palliative care, and
on assessment by two independent doctors or nurse practitioners, are determined to have a grievous and incurable medical condition, which means they have a serious and incurable illness, disease or disability; they are in an advanced state of decline that cannot be reversed; the illness, disease, disability or state of decline causes enduring physical or psychological suffering that is intolerable and cannot be relieved under conditions that the patient considers acceptable; their natural death becomes reasonably foreseeable. (On Feb. 24, 2020, the Liberal government of Canada introduced a bill to further amend the Criminal Code to, among other things related to MAiD, allow eligible persons to pursue a medically assisted death whether their natural death is reasonably foreseeable or not.)

A patient who has requested MAiD must be given the opportunity to withdraw their request throughout the process, including immediately before the medical assistance is administered, and this withdrawal need not be in writing or in any other particular form. Just an indication of a change of mind will do. And be aware that only patients who are themselves capable of giving consent can request MAiD. A request by a substitute decision-maker or by way of an advance directive is not valid.

Start the discussion

There is much more information available on end-of-life options than touched on in this article, and many matters not covered herein, but there is enough here to allow you to begin a conversation with those in your life who you want to make decisions for you when you cannot.

This is a lot to cover in one conversation. You can have as many conversations as you need – just get started before unwelcome circumstances make it too late. You will be doing yourself and your loved ones a big favour.

Tony DuMoulin is a founder of the law firm of DuMoulin Boskovich, where he practised commercial and real estate law for 40 years. He has a long history of involvement in Jewish organizations and municipal projects. DuMoulin is on the executive board of Jewish Seniors Alliance, in whose magazine, Senior Line, this article originally appeared in July 2020, Vol. 27(2).

The 2019 Summer Celebration cover photo

photo - Baila Lazarus, z"l — Baila Lazarus, z”l

(photo by Cynthia Ramsay)

This year’s Summer Celebration cover photo was taken from the Vancouver General Hospital palliative care unit’s outdoor garden, on the 16th floor of the Jim Pattison Pavilion. It is dedicated to our dear friend and colleague Baila Lazarus who, at the age of 57, died at the hospital on May 31, due to complications of multiple myeloma. She was resilient to the end. May her memory be for a blessing.

On access to palliative care

The way a society treats its most vulnerable speaks volumes about its principles. There are few more vulnerable than those reaching the end of life. The physical, emotional, interpersonal and spiritual challenges confronted at life’s end are immense. Just as we expect our healthcare system to be there for us throughout our lives, so too must it support each of us – and our families – as we enter life’s final chapter.

Palliative care is a policy issue that has the potential to touch every family across the country. According to the Canadian Hospice Palliative Care Association, only 15% to 30% of patients approaching the end of life have access to palliative care. With Canada’s population continuing to age, existing shortfalls in the system will only grow in the coming years.

While the federal government has taken the vital step of announcing additional federal funds for home care and palliative care, more can be done to ensure that no patient seeking palliative care is denied. This is why the Centre for Israel and Jewish Affairs (CIJA) has taken a lead role in mobilizing an interfaith coalition to urge Ottawa to take action on this issue.

Working with Catholic, Evangelical and Muslim allies, CIJA’s efforts achieved a key milestone in late 2017, when Parliament passed Bill C-277. This bill, which received strong support from MPs across party lines, called for the establishment of a national palliative care strategy. Our next step is to ensure that the national strategy that flows from Bill C-277 strengthens end-of-life care for all Canadians.

For this reason, in partnership with others, CIJA is organizing an expert working group to provide us with advice regarding Canada’s national palliative care strategy. An essential portion of these suggestions will be based on the patient and family experience, which is why I invite every reader to consider whether they have personal insights they can share with us.

Can you attest to the importance of high-quality palliative care, perhaps having had a loved one who received excellent end-of-life care? Or, do you have a family member who, despite seeking it, was unable to access appropriate hospice or palliative care? We want to hear your stories – and government policymakers need to hear how these policies affect real lives. Email [email protected] to share your experiences with palliative care.

It is an extraordinary act of chesed to care for a person in their final days of life. Our healthcare system, in which Canadians rightly take pride as evidence of our nation’s innate sense of kindness, must do better to ensure that those who need palliative care are never denied this essential service.

Steve McDonald is director, policy and strategic communications, at the Centre for Israel and Jewish Affairs (CIJA).

Cancer makes me angry

Cancer. Now I’ve said it. Just saying it tightens up my gut. It makes me want to swallow. I look around to see if anyone can sense the anger, the blind rage that surges through me. I find myself breathing faster. The fight-or-flight chemicals prompted by fear are racing through my body. Mostly, I try not to think about it because of the instant effect it always has upon me. I don’t know about others, but I hate it. Just the thought of it makes me angry.

To me, the idea of cancer is like a living presence, dressed up in the image of death, stalking through our lives, the destroyer of health and happiness. It looks this way and that, it looks for those at whom it will swing its lethal scythe. I know it’s really like spores in the wind, poisons in the soil, air and water, or genetic predispositions hiding in our DNA, waiting for the merest provocation to flower like a deadly bloom of nightshade. I know it is like an evil charlatan that smilingly gives way to our defensive measures, only to strike back with deadly force when we have let down our guard. I know it has so many disguises and tricks that we have to learn the new ones every day that we are alive. It takes some of our best minds to keep us relevant in that battle.

I know about all the new promises, new hopes yet to be realized. We learn something new every day. But, so does cancer, reacting to counter every twist and turn we make. We are not there yet in spite of all the public promises that are made. It is not politically correct to say it, but the same promises were being made during the time cancer was a living presence in my home. So I retain the hate that I learned.

When it struck in our home, we reacted with shock. We marshaled our resources and radically changed our lifestyle. My late spouse gave up her stressful and demanding work. She was a simultaneous translation interpreter. She was the manager and creator of her own firm, one that was preeminent in Canada, but she delegated her work and ceased professional activity. She underwent a mastectomy, radiation and chemo. We changed our diet toward the completely macrobiotic and a shelf full of recommended natural products. The result – in six months all traces of the disease were eradicated! We declared victory. My spouse became a poster child, a survivor, to rally the spirits of all victims of the disease. After a year, we relaxed our guard and returned to our previous way of life.

Four or five years later, two cancer cells were discovered during the regular screening that had been maintained. The number of cells quickly multiplied and, after a time, a regular regime of chemotherapy was reintroduced, accompanied by multiple discomforts. This continued for years. No material effect on the disease’s progress was ever noted. Eventually, several metastases were discovered, until the cancer was generalized. None of the chemotherapy offered appeared to have had the least effect.

My role changed over time, as I became a full-time caregiver. Indeed, after years of feeling like a helpless bystander, there was great consolation in, at last, being able to play a useful role. I had the feeling I was witnessing hand-to-hand combat with the cancer, a living, breathing adversary. I hated the losses we were sustaining on a daily basis. The success of radiation sessions in fighting off the external manifestations of the cancer felt like victories.

At one point, the cancer prevented the kidneys from working. The doctors asked if we wanted them to intervene. Although my late wife declined, because she was suffering the effects of uremia, which impairs judgment, my resounding yes won the day. The intervention was successful. We went off on a two-week holiday in Italy. I treasure to this day the sight of her dancing to her own music on a sunny balcony in Tuscany.

The medical resort to radiation to eliminate ugly lesions that appeared, time after time, on various areas of the body, seemed like a blessing. But, the ultimate effect of these sessions was to destroy the ability of the body to produce the red and white blood cells we depend on for life. I did not understand that these were a signal that the medical profession had given up any hope of a remission, because the doctors continually talked to us of impending victory. I did not question it, full of continuing hope as I was. In effect, they were offering palliative care, while continuing to test drug combinations on my late wife.

Eventually, these blood cells could only be provided for her by external means. We learned, after a time, that these infusions of blood cells, enormously costly, were the only way to keep my late wife alive. I always assumed these would continue, but I marveled at the generosity of the system on which her life depended. The various chemotherapy combinations, with all their accompanying distress, continued to be presented by doctors as the answer and the cure. She followed every prescription faithfully in spite of the discomfort they engendered.

Suddenly, we were informed by the hospital administration that my late spouse was to be assigned to hospice care in our home. Calls to the doctors went unanswered. Any assistance I could provide was replaced by outside help. We were told that the life-giving infusions were being withdrawn. She expired after three weeks, 10 years after first contracting the disease.

I do not know if the doctors ever confided to my late wife the real state of the struggle in which we were engaged. If they did, she never shared the details with me. We never ever spoke of her impending demise.

I remain a survivor of the experience, full of anger at the caregivers, anger at my helplessness and ignorance, and full of rage against the inexorability, the implacability of the disease. Its overwhelming power in the face of our defences, even after once having been initially repulsed, gives me little faith in the happy claims of any early relief in our struggles against the disease.

I appreciate that there have been some small victories, that some conditions have become treatable instead of fatal. I am grateful for that. I appreciate that we must encourage those who are facing the challenge and the threat. I know that they, and we, have to continue fighting it like soldiers on the frontline, despite our many losses. Cancer, I hate it!

Max Roytenberg is a Vancouver-based poet, writer and blogger.

Fogel on health, Trudeau, BDS

Shimon Fogel, chief executive officer of the Centre for Israel and Jewish Affairs (photo from CIJA)

Shimon Fogel, chief executive officer of the Centre for Israel and Jewish Affairs (CIJA), was in Vancouver June 20 to speak at the Jewish Federation of Greater Vancouver’s annual general meeting. He spoke with the Jewish Independent prior to the gathering.

“CIJA does not regard itself as an independent organization with an independent ego,” he said. “We very much see ourselves as an internal mechanism of the community. We regard making a presentation at the AGM as addressing our stakeholders and providing an assessment of what value we add to the Federation program, and giving an opportunity to receive feedback.

“This takes us back to what the rationale was in consolidating different Jewish organizations together and the value of integrating all of the different silos that emerged in the Jewish community, for good reasons in their time,” he said, referring to the merging of Canadian Jewish Congress and the Canada-Israel Committee to form CIJA in 2011. “Integrating everything ensures that there is an holistic approach. It also provides us with an opportunity to show Canadians that we are not unidimensional. If I were just working within the Canada-Israel Committee, you would think that there were no issues of importance to me other than Israel, but the truth is that I am as seized with the issue of the protection of transgender rights as I am with immigration issues and having a meaningful response to the international refugee crisis.”

The dissolution of CJC and the CIC was controversial at the time, however, and there are community members who still feel their absence.

“We were never sanguine about people’s attachment to the CJC,” said Fogel. “It had a long and storied history. There were points during that history when the CJC shined as an example not just in Canada, but internationally. There was never an intent to diminish that or marginalize the importance that they had. The reality was that the political landscape changed, pressures within the community in terms of limited resources came to bear, and there was a need to eliminate the kind of competition that was emerging between one agenda and another…. Confusion was beginning about this alphabet of acronyms and who does what, and this made it obvious that there was real benefit in consolidation.”

The issues with which CJC dealt remain on CIJA’s agenda, said Fogel. “On balance, at any given time, we’re spending way more than 50% of our time and resources both staff and programming on things other than Israel,” he said.

As an example, the week prior to when Fogel spoke with the Independent, an interfaith coalition called on elected officials “to support a robust, well-resourced, national palliative care strategy.” CIJA was involved in this initiative.

“The recent discussion about physician-assisted dying (PAD) [prompted by Bill C-14] begs a larger question, one that we have been concerned about for a long time, but didn’t lend itself to the kind of focused attention that we were able to secure in the last few weeks,” explained Fogel. “All evidence, if we look at the countries that have adopted some kind of protocol with regard to PAD, points to the conclusion that almost no one in a given society accesses that option to manage their end-of-life situation.

“If we were to translate it to Canadian terms, I don’t know that we would have two dozen a year who would be availing themselves of that option. What that means is a need to ensure that resources are in place to provide support for the individual who is suffering the illness and, no less importantly, for their family members, the front-line caregivers, who are assisting and supporting the individual as they approach end of life. Because there was such a focus on PAD, we felt that it should not be lost in the course of the public policy debate that what’s really important for Canadians to appreciate is that as we are confronted by an aging population and we need to look at improving palliative care options. We had to wrap our heads around a national strategy that was going to ensure the same set of standards that are applied to other dimensions of the health-care system. A discussion now about palliative care is an important and therapeutic complement to the narrow-band discussion about PAD.”

Palliative care covers a much broader range of issues and affects a much larger group of people than PAD. With the aging population, said Fogel, “we have adult children who have become caregivers, who are being torn in multiple directions, between home responsibilities and work, between attending to their parents and attending to their children; it is costing them physically, emotionally and financially.

Accommodation in the workplace is not what it should be, and the provision of relief support is not there in an adequate way and, sometimes, not there at all; for example, in communities outside of the largest urban centres.

“We want governments to direct their attention to this. We are coming up to a new national-provincial agreement on the provision of health care in the next year or so. This is a health-care issue, not a social or political issue. It has to be seen as part and parcel of the package of health-care services that are provided, or there is no hope of getting it addressed in any kind of meaningful way.

“There are things that are unique to the Jewish community but most things are generic and we have to constantly reinforce that the experience of the Jewish community is simply a reflection of the broader experience within Canadian society,” he added. “Because we are a little more sophisticated in our infrastructure and the importance that we attach to communal organization, we are often at the leading edge of issues, so reaching out and partnering with others is both important to advance the issue and provides us with an opportunity to develop relationships that are important both for Canada as a society and for us.”

One of those to whom CIJA reached out was Prime Minister Justin Trudeau – well before he and the Liberal party were elected last fall.

“There were some challenging times a number of years ago and, in that period, the Conservative party asserted themselves as a party that was remarkably sensitive and responsive to the needs of the Jewish community, not just with regards to Israel but on issues of antisemitism and inclusion,” Fogel said. “That skewed things perceptually more than they might have been otherwise, but we’ve never stopped investing in the Liberal party.

“People like Justin Trudeau were individuals who we reached out to and brought to Israel long before he was a candidate. He went with his wife and then facilitated all of his advisers to participate in trips to Israel, so we greeted the new government knowing all of the principals and having developed a very, very close and positive relationship.

“That it’s a very different government is beyond question and that’s really genetic to their whole approach to things,” Fogel acknowledged. “They attach a great deal of importance to multilateralism and that’s distinct from the approach of the previous government, which was fond of saying that it was driven by principle and principle alone. The Trudeau government sees inherent value in partnering with other countries. That brings its own challenges because, when you are just responsible for your own opinion, you can articulate whatever opinion you want; when you want to join with others, it means accommodating different views, whether they are substantially different or it’s just nuance.

“That having been said, I think that the record over the last eight months has been remarkably strong. I’m fond of pointing to what many saw as a low point as proof that things really are quite good. You will recall back on International Holocaust Remembrance Day, some were quite upset that in the initial comment from the PMO [Prime Minister’s Office] there was no explicit reference to Jews. Now, I know how that happened. January is still very early days in the new government, they were still staffing up. This was a whole new government and really a whole new generation – 10 years is a long time in politics. Not everything was in place [for the Liberal government], and this was an absolutely honest oversight.

“The real test,” said Fogel, “wasn’t that a comment was released that didn’t include the word ‘Jewish’ – the test was that, within half an hour after we had flagged for them that this wasn’t being well received, a new statement was issued which was quite explicit. The degree of responsiveness that the government demonstrates for a concern expressed by the Jewish community is the real test for the quality of the relationship.”

CIJA does not take its relationship with the government for granted.

“We’re grateful for it,” said Fogel. “Even in terms of things that are Israel-related. We think the French-led initiative on an Israeli-Palestinian peace process is not just unhelpful, it has the potential to push back a peace process rather than serving as a catalyst for it. Now, because of Canada’s desire to be part of the international effort on anything, doesn’t matter what, Canada wanted to participate in a conference on that a few weeks back, which we accept because that’s the orientation of this government.

“What we had asked for was for Canada to advocate for a particular direction, and they were very responsive. They made the point about nothing replacing direct negotiations and that established resolutions like [the 1967 United Nations Security Council Resolution] 242 had to be seen as the foundation for anything going forward. For good measure, they threw in that Israel was their strong ally, language which does not go way back in Canadian descriptions of the relationship with Israel.

“I don’t think it’s going to remain so consistently good on each issue that comes up,” he cautioned. “I think there will be times we differ from the government. People find it a little hard to believe, but we differed from the last government too and the relationship was sustained notwithstanding.”

One issue on which the current and previous federal governments have agreed is their condemnation of the boycott, divestment and sanction movement against Israel. The issue is high on CIJA’s agenda, of course.

“I see the BDS movement as inherently toxic,” said Fogel. “I see it as antisemitic and I see it as a base, cynical strategy. What it does is exploit the natural and rightful resonance that human rights language has. The language of human rights has become almost a secular religion and it resonates with people so, when that is the language used in order to promote and advocate for something, the default inclination of most people of goodwill would be if not to embrace it, at least to refrain from criticizing it. Yet, we know that the genesis of the BDS movement is in anything but human rights, and core promoters don’t hide their core agenda to delegitimize, isolate and dismantle the Jewish state. What I’m gratified at is that the progressive majority have come to recognize that BDS is not about critiquing a particular Israeli government or position, it’s about denying the right to self-determination of the Jewish people in a way that differentiates from the way you would treat any other group. The way that it iterates antisemitic tropes has prompted many to push away from association with BDS, so I do take some encouragement from people finally starting to apply critical thinking to and connecting the dots and saying, no, this isn’t what it appears to be.”

When asked what are the most effective strategies for the Canadian Jewish community to fight against the negative aspects of the BDS campaign, Fogel said, “I don’t think it is limited to BDS – I think the best strategies to advance understanding boil down to three things.

“We have to be intellectually honest about who we are. The Jewish community offers something valuable to the larger society, and we should be eager to share that and to use that as a way to achieve the second thing, which is to partner with others. We have much more in common with others than that which separates us. We have a rich legacy to share. We have experiences that are instructive and helpful to others in terms of challenges that they face and, very often, we find ourselves in the position of providing advice and direction.

“The third is recognizing that we have to reach out to others on the basis of what is meaningful to them. I can feel whatever I feel about anything but I will never be able to present a persuasive argument if they can’t relate to the terms of reference. This has been, I think, both our greatest source of success and the greatest source of criticism from some sectors of the Jewish community. We can’t indulge in those emotionally satisfying but superficial arguments where we pound our fist on the table and say that we’re right because we have justice on our side; because, for most, that has no meaning and we’re simply relegated to the same place as our adversaries by those who can relate to neither. We have to communicate on the basis of shared values.”

Matthew Gindin is a Vancouver freelance writer and journalist. He blogs on spirituality and social justice at seeking her voice (hashkata.com) and has been published in the Forward, Tikkun, Elephant Journal and elsewhere.