Preparing for Death

This is a copy of lecture given 3/22/11 at Terwilliger Plaza by Peter Goodwin, a resident of the Plaza.

Preparing for death by Peter Goodwin, MD

Peter Goodwin, MD

I have a rare degenerative disease of the brain, cortical basal degeneration. Its cause is unknown and there is no treatment. It is progressive and leads to death 6 to 8 years after onset. I have had it for 4 1/2 years. My right hand is close to useless because of weakness, a severe tremor when I try to pick up small objects, and a loss of proprioception, which means that I don't know where it is in space until I look at it. My right leg is weakening, my balance is getting more and more uncertain, and my left hand is beginning to be affected. I need home help to make my bed up weekly. I can still do my personal laundry, but need help in folding and storing garments because doing so myself has become frustrating and difficult. By exercising regularly and, getting advice from PT and OT I hope I will slow its progress, but I have no idea if I can. As I lose function I find ways to adapt, but showering, dressing and undressing are slowly becoming more difficult. I know I will need help with these soon, and have reconciled myself to the need. But what will I do when I lose the capacity to feed myself and cleanse myself? Such simple things as putting toothpaste on a toothbrush, applying deodorant, and putting socks on often make me smile and sometimes curse at my increasing clumsiness.

I decided to talk about my illness because it raises issues similar to those presented by many other degenerative diseases with progressive loss of function such as heart disease, cancers, emphysema, Parkinson's, ALS, and Alzheimer's.

Many of you know I was much involved in establishing the Oregon Death with Dignity Act, and I am determined to keep all my options open as I die. How does one plan to do so?

Oregon's advance directive law allows us to decide when we are competent to make healthcare decisions about what level of care we want when we are no longer competent: close to death, permanently unconscious, with an advanced progressive illness or extraordinary suffering. We may choose whether or not to have life support and/or tube feeding or to leave the choice to the attending physician or to a health care representative we appoint. It is crucial if you want treatment withheld at the end of life to make your wishes clear to family members, to your health care representative, especially to your physician, and make certain they are all on the same page. Tertiary care physicians, oncologists especially, are often reluctant to give up on treatment and you need to ask your family physician if he would intercede for you. If family members object, they need to be told, and it needs to be noted that they will be excluded. We need to choose a health care representative who will act in a determined way to ensure that our wishes are satisfied. Make sure copies of your advance directive are given to your lawyer, your doctor, your health care representative, your family members and your spiritual advisor, if appropriate.

A Physician Orders for Life-Sustaining Treatment (POLST) form is completed and signed by your physician after a joint discussion. It is only for emergency situations when an EMT is called. Its contents are computerized and available from OHSU for the EMT. Do you want resuscitation if you are found pulseless and not breathing? If you are over 80 the chance of meaningful recovery is less than 10%. In lesser circumstances you have the choice of comfort care only increasing to full treatment with hospitalization. Completing the POLST form informs your physician of the level of care you want.

As a patient suffering from a progressive illness approaches the end of life decisions about the intensity of treatment are made. Most times physicians will continue intensive treatment, even as treatment begins to fail. Patients and family members are often reluctant to give up on treatments that may prolong life. However there is increasing evidence that patients are often better off, suffer less and die more peacefully with palliative care directed to the relief of symptoms. It helps that decision if treatment options and expected results are made clear to see if they are remaining effective. If the patient chooses palliative care the treating physician may label the patient as depressed and insist on treatment with antidepressants. Be aware of this possibility.

Hospice is the cornerstone for palliative care. Often referral by treating physicians is made very late -- too late hospice workers believe for real benefit. Patients and family are reluctant to give up "hope" and may encourage treatment that has become futile. To be eligible for hospice your attending physician must agree that the patient has a prognosis of less than six months to live. If treating physicians will not make such a referral a direct appeal to a local hospice will be referred to the hospice physician to decide if the patient is eligible. The specialty of palliative care is growing rapidly, and palliative treatment has become very effective. As a last resort when the patient's symptoms of pain cannot be adequately relieved he or she may receive terminal sedation, being heavily sedated almost to the point of being anesthetized.

Dying patients who demand autonomy and have always been in control of their lives may wish to die at the time of their choosing. The Oregon Death with Dignity Act allows terminally ill patients with a prognosis of six months or less while competent to make healthcare decisions and acting voluntarily to receive a lethal prescription from the attending physician. There are many safeguards and restrictions. Physicians may not participate for a variety of reasons. Dying patients who qualify for the law and cannot access it may be helped by Compassion and Choices of Oregon (CCO). CCO assists about 80% of patients using the law and over 90% of these are under hospice care. Even after receiving a prescription two out of five die peacefully under hospice care. I will want aid in dying for myself eventually but when I do I will have to rely on my physicians to decide on my prognosis. If they refuse my request for medication I may decide to stop eating and drinking. As my prognosis will then be less than six months I shall be able to get help from hospice, sedation and other palliative care.

Dying without making these arrangements is like dying without a will. Without a will your estate is vulnerable to the excesses of the legal system. Without a living will (advance directives), completion of the POLST form, an awareness of hospice and of the Oregon Death with Dignity Act you are vulnerable to the excesses of the healthcare system.