A Judge’s Plea for Pot

THREE and a half years ago, on my 62nd birthday, doctors discovered a mass on my pancreas. It turned out to be Stage 3 pancreatic cancer. I was told I would be dead in four to six months. Today I am in that rare coterie of people who have survived this long with the disease. But I did not foresee that after having dedicated myself for 40 years to a life of the law, including more than two decades as a New York State judge, my quest for ameliorative and palliative care would lead me to marijuana.

My survival has demanded an enormous price, including months of chemotherapy, radiation hell and brutal surgery. For about a year, my cancer disappeared, only to return. About a month ago, I started a new and even more debilitating course of treatment. Every other week, after receiving an IV booster of chemotherapy drugs that takes three hours, I wear a pump that slowly injects more of the drugs over the next 48 hours.

Nausea and pain are constant companions. One struggles to eat enough to stave off the dramatic weight loss that is part of this disease. Eating, one of the great pleasures of life, has now become a daily battle, with each forkful a small victory. Every drug prescribed to treat one problem leads to one or two more drugs to offset its side effects. Pain medication leads to loss of appetite and constipation. Anti-nausea medication raises glucose levels, a serious problem for me with my pancreas so compromised. Sleep, which might bring respite from the miseries of the day, becomes increasingly elusive.

Inhaled marijuana is the only medicine that gives me some relief from nausea, stimulates my appetite, and makes it easier to fall asleep. The oral synthetic substitute, Marinol, prescribed by my doctors, was useless. Rather than watch the agony of my suffering, friends have chosen, at some personal risk, to provide the substance. I find a few puffs of marijuana before dinner gives me ammunition in the battle to eat. A few more puffs at bedtime permits desperately needed sleep.

This is not a law-and-order issue; it is a medical and a human rights issue. Being treated at Memorial Sloan Kettering Cancer Center, I am receiving the absolute gold standard of medical care. But doctors cannot be expected to do what the law prohibits, even when they know it is in the best interests of their patients. When palliative care is understood as a fundamental human and medical right, marijuana for medical use should be beyond controversy.

Sixteen states already permit the legitimate clinical use of marijuana, including our neighbor New Jersey, and Connecticut is on the cusp of becoming No. 17. The New York State Legislature is now debating a bill to recognize marijuana as an effective and legitimate medicinal substance and establish a lawful framework for its use. The Assembly has passed such bills before, but they went nowhere in the State Senate. This year I hope that the outcome will be different. Cancer is a nonpartisan disease, so ubiquitous that it’s impossible to imagine that there are legislators whose families have not also been touched by this scourge. It is to help all who have been affected by cancer, and those who will come after, that I now speak.

Given my position as a sitting judge still hearing cases, well-meaning friends question the wisdom of my coming out on this issue. But I recognize that fellow cancer sufferers may be unable, for a host of reasons, to give voice to our plight. It is another heartbreaking aporia in the world of cancer that the one drug that gives relief without deleterious side effects remains classified as a narcotic with no medicinal value.

Because criminalizing an effective medical technique affects the fair administration of justice, I feel obliged to speak out as both a judge and a cancer patient suffering with a fatal disease. I implore the governor and the Legislature of New York, always considered a leader among states, to join the forward and humane thinking of 16 other states and pass the medical marijuana bill this year. Medical science has not yet found a cure, but it is barbaric to deny us access to one substance that has proved to ameliorate our suffering.

Complete Article HERE!

The Archbishop of York and Assisted Dying

COMMENTARY (Campaign for Dignity in Dying)

The Archbishop of York has been talking about the medicalisation of dying and that, as a society, we seem to have lost the ability to prepare for the end in the Telegraph. On this I agree. More does need to be done around ensuring we are as involved as possible in our deaths, this could include making an Advance Decision and making sure you’ve discussed them with your healthcare team and family.

However, what I do have issue with is the way he implies that assisted dying in the UK would be an alternative to good quality care. We campaign for the legalization of assisted dying as a safeguarded choice for terminally ill adults who meet strict criteria – it would not be available as an option for disabled or chronically ill adults who wanted to end their life, nor would it be an alternative to – or negatively impact on – supportive and palliative care.

Evidence from Oregon, where assisted dying for terminally ill adults with mental capacity was legalized in 1997, demonstrates that lack of palliative care is not a motivation for requesting assisted dying. Nearly 100% of patients who have had an assisted death were enrolled in hospice care at the time of their death and reasons for wanting assistance to die focus on autonomy and quality of life issues, rather than pain control and feeling like a burden on family. Importantly in Oregon, there has been no negative impact on end-of-life care in general and hospice care continues to get better and Oregon is fifth in terms of access and spread of hospices.

Similarly, in 2011 the European Association for Palliative Care produced a research report which concluded that palliative care in countries with legalised assistance to die practices (primarily the Netherlands and Belgium, both of which practice voluntary euthanasia for terminally and chronically ill patients – which is wider than what Dignity in Dying campaigns for) is no less well developed than in comparator countries where there is no such legislation.

The argument that the Archbishop makes about celebrating and living life to the full and that a good death is also part of a good life do not run counter to the arguments for assisted dying. Allowing safeguarded choice on the end of your life if you have a terminal illness means allowing peace of mind and control over your situation and allowing you emotional comfort in your last weeks or months (in Oregon approximately 40% of patients who request assisted dying, pass the safeguards and get the life-ending medication do not take the medication – rather they see it as an emotional insurance).

So, whilst the general statements by the Archbishop around needing to embrace the dying process as a necessary part of life are to be applauded, perhaps he needs to check the facts before making statements about the impact of assisted dying on quality of care. Many people talk about death and dying because they talk about assisted dying. Rather than attacking those who support a change, those strongly opposed should acknowledge common-ground and seek to work together for much needed improvements.

Complete Article HERE!

On The Cutting Edge

I’m receiving a lot of email asking me about The Amateur’s Guide To Death And Dying: Enhancing The End of Life. My correspondents want to know what makes this book different from the myriad other books on the topic. The best way to explain is to quote from the introduction of the book.

I’ll be posting more about this in coming days. Thank you for your interest.

 

 

USING THIS WORKBOOK*
If you are reading this book you already know that our society has an enormous death taboo and that few opportunities exist for sick, elder and dying people to connect with others in a purposeful way. You probably also know that instead of taking a lead role in orchestrating our finales, we are expected to be unobtrusive, dependent on the care of others and wait passive-ly and patient-ly for the curtain to fall.

Well, you can kiss that unhealthy mentality goodbye right now. The Amateur’s Guide to Death and Dying is, as its title suggests, an interactive workbook for enhancing the end of life. It is designed to help you reclaim your dignity and dispel the myth that sick, elder, and dying people are unable to take charge during their final season of life.

The Amateur’s Guide offers you a way to face your mortality within a framework of honesty, activity, alliance, support, and humor. And most importantly, instead of having some well-meaning “expert” lecture you on how to think and feel, you’ll be learning how to navigate through this new territory from the best possible teachers available – other people just like you.

The most exceptional aspect of this workbook is its format. The Amateur’s Guide is modeled on a remarkably successful 10-week program developed by PARADIGM Programs Inc., a nonprofit organization in San Francisco. You will be included in an on-the-page support group, which simulates participation in an actual PARADIGM group.

The Amateur’s Guide offers practical information on the nuts and bolts of successfully living one’s dying. As in our real-life groups, you will be exposed to authentic life situations that arise when people consciously face their mortality in our death-negative society.

You will gain insight and perspective into a myriad of issues related to dying in this modern age. In addition, six dynamic speakers will present you with important and timely information that is full of humor and compassion.

All of this is designed to help make the end of life less of an intimidating process and more of a rich, poignant transition.

You’ll find everything you need, right here, to be an active participant in this process.

* From Getting Started, the introduction to The Amateur’s Guide To Death And Dying: Enhancing The End of Life

Face Your Mortality Like a Pro

Let’s make one thing crystal clear from the start. There‘s no one way of dying well. However, there are some things we might want to consider if that is our goal.*

  • First, death isn’t only a universal biological fact of life, part of the great round of nature; it’s also a necessary part of what it means to be human. Everything that we value about life and living — its novelties, challenges, opportunities for development — would be impossible without death as the defining boundary of our lives.
  • While it may be easy to accept death in the abstract, it’s often more difficult to accept the specifics of our own death. Why must I die like this, with this disfigurement, this pain? Why must I die so young? Why must I die before completing my life’s work or before providing adequately for the ones I love? These are some of the most difficult questions dying people ask themselves. This workbook will provide you with the opportunity to find your own answers to these pressing questions.
  • Living a good death begins the moment we accept our mortality as part of who we are. We’ve had to integrate other aspects of who we are into our daily lives – our gender, racial background, and cultural heritage, to name a few. Why not our mortality? This workbook will provide you the support you need to begin the process of acquainting yourself with death and growing empowered in your new identity as a mortal. Putting death in its proper perspective will help you regain control of your life and achieve a greater sense of balance and purpose.
  • Dying can be a time of extraordinary alertness, concentration, and emotional intensity. It’s possible to use the natural intensity and emotion of this final season of life to make it the culminating stage of your personal growth.
  • In the process, you will pioneer new standards of a good death that the rest of us can emulate. You’re in a unique position to help the rest of society desensitize death and dying. Most importantly, you’ll be able to support those you love as they prepare for your death. In fact, you’ll be able to join them as they begin their grieving process.
  • You’ll regain lost dignity by actively involving yourself in the practical preparations for your own death. Some of the things we’ll be considering include negotiating pain management, choosing the appropriate care for the final stages of dying, putting your affairs in order, preparing rituals of transition, as well as learning how to say good-by and impart blessings.
  • Finally, you’ll learn to heed the promptings of your mind and body, allowing you to move from a struggle against dying to one of acceptance and acquiescence.

* From Getting Started, the introduction to The Amateur’s Guide To Death And Dying: Enhancing The End of Life

Hello world!

Please be patient with us as we pull this new site together.

We are here to promote the publication of The Amateur’s Guide To Death And Dying; Enhancing The End Of Life.

Look for the publication announcement on May 21, 2012