Your end-of-life plans won’t work if you don’t talk about them

The headline seems obvious, right? But unfortunately, failing to tell your loved ones what type of care you would want if you suffer from an illness which will eventually lead to your death is all too common. The Boston Globe had an essay a few weeks ago, which was written by a young physician who had observed the results of a failure to communicate:

Mrs. M found herself at home, unable to breathe. Her husband called 911 and she was rushed by ambulance to the emergency room. As her shortness of breath worsened, all she could say was “help me.” The medical team immediately jumped into action ordering blood work and a chest X-ray, placing an IV line and administering antibiotics. Eventually, anesthesia was called to insert a breathing tube and Mrs. M was placed on a ventilator because she could not breathe adequately on her own. Unfortunately — and unbeknownst to anyone present — this was not the type of help she sought.

Mrs. M had spent the last few months under the care of a hospice nurse with whom she had developed a close relationship. On several occasions, she explained to this nurse that she had no desire to be placed on a ventilator again, as she had been so many times in the past. The next time her lung disease worsened, she wanted medicines to make her comfortable so that she would not feel the awful sensation of ‘air hunger’ that accompanied her severe shortness of breath. She knew that her lung disease was slowly killing her, and she hoped to spend her final days at home, comfortable and at peace, rather than in a hospital hooked up to a machine.

 

To ensure that her wishes would be met, Mrs. M designated her husband as her official “health care proxy” should she lose the ability to make her own decisions. In Massachusetts, this involves signing a document designating a spouse, family member, or friend to take responsibility for health care decisions if an individual is unable to do so. When we as doctors can no longer communicate directly with a patient because of their mental or physical illness, we seek the advice of the health care proxy so as to best honor our patient’s wishes.

 

While Mrs. M had outlined her desire for comfort-focused medical care to her nurse, she never broached this difficult subject with her husband. He was unaware that she never wanted a breathing tube or ventilator, or to be re-admitted to the hospital. Only later, after speaking with Mrs. M’s nurse, did he understand how much his wife had quietly suffered from her disease and why she hoped to pass naturally at home rather than in the midst of aggressive medical care.

You can’t blame the doctors for taking action if you do not communicate your wishes to your health care agent. I’ve had conversations with clients who wanted to name their children as their health care agents but were reticent to have candid discussions about the full extent of their medical problems or did not want to have a difficult conversation about death. At the same time, there are some adult children  who simply cannot stand the thought of having to talk to their parents about the parents’ eventual demise.

But at the same time, even when you communicate with your primary care providers (here, the hospice nurse), it doesn’t mean that those wishes will be passed on to other doctors and hospitals. There is a new tool in Massachusetts called MOLST (Medical Orders for Life-Sustaining Treatment) which promises to help. Unlike a health care proxy, which is a legal document, a MOLST is supposed to be entered into the medical record of a patient facing late-stage illness. The MOLST form contains specific information completed by the treating physician and patient concerning the patient’s desires for how end-of-life care should be managed under different scenarios. MOLST is being gradually rolled out, with the goal of widespread use throughout the state by early 2014.

This sounds like a good idea — as long as the paperwork actually follows the patient in either electronic or paper form. I’m not convinced that will happen if there is more than one hospital chain in the area like there is in the Boston area. I’ll be interested to see how MOLST pans out.

Being female continues to get more expensive

As an elder law attorney, I regularly suggest to my clients that they investigate purchasing long-term care insurance as a hedge against the cost of costs associated with aging, especially if they have any interest in planning for the cost of long-term care and asset protection. I still think it’s generally a good idea. However, one thing that purchasers should be mindful of is that there is no guarantee that the price of the premium will remain the same over time or that they will even be able to get coverage at an affordable rate.

In the last two years, several major insurers, including MetLife, Prudential, and Allianz, have stopped selling policies; while others, like Genworth, are significantly restructuring their underwriting rules and premiums.  One major change in the rules is to start charging women more for coverage. From an insurer’s point of view, this change is understandable. Women live longer, so they have more time to become disabled — a fact which the industry seemed to have overlooked when they started selling these in the 1980s. Seven out of ten residents of nursing homes, 76% of assisted living residents, and 66% of recipients of home care services are female. As a result, insurers are now charging new female policyholders more than they are charging male policyholders. Single women searching for new policies will be hit particularly hard, with insurance commissioners approving rate hikes of as much as 40%.

However, the head of one trade group argues that the real culprit is the low interest-rate environment. Insurers need to make enough money through fairly conservative investments to pay out claims. The combination of very low interest rates and unexpected demand for payment of claims is forcing rate hikes.

Whatever the reason may be, shop carefully for a policy. Work with an experienced long-term care insurance agent who sells for a number of different policies, so you can compare your options.

Emergencies and independent retirement communities

Here’s a very disturbing article concerning the death of an elder who resided in an independent living facility in California. Despite the rather obvious risk that elderly people living in their facility may have medical emergencies that require CPR or other life-saving interventions,the facility has a policy forbidding staff–including the nurse on duty –from providing medical help beyond calling 911.  The facility’s executive director said that the nurse acted appropriately under the terms of its policy, even though the 911 operator begged the nurse to perform CPR or get someone who would.

We’ll never know, of course, whether the elder would have survived had CPR been provided while waiting for the ambulance to arrive. Statistics show that as few as 3% of persons administered CPR survive. But that’s not the point. The nurse apparently was just following orders, even though most states have “Good Samaritan” laws which waive liability for anyone responding to an emergency. Further, it’s possible that unless the nurse knew the elder had a Do Not Resuscitate order, her failure to provide CPR might result in a legitimate complaint to the California agency which licenses nurses.

So what’s the takeaway here? In Massachusetts, independent senior residences and assisted living facilities are governed by landlord-tenant law and are not created with the intent to provide medical care. However, medical emergencies happen and the staff may be the only persons who are physically capable of reacting quickly and providing care until the ambulance arrives. So you need to ask some questions about the facility’s medical emergency policies and procedures before signing your lease or rental agreement. Ask whether the facility will provide additional assistance beyond calling 911 in the event of an emergency or if its policy bars employees from providing that assistance. Ask for a written copy of its policy and if they don’t have one, ask why. Ask what training employees have had in CPR and other types of emergency care. Ask whether there are any portable defibrillators on the premises and whether the staff has had training in using them. And above all, have the lease or rental agreement reviewed by an attorney to be sure that you won’t be giving the landlord carte blanche to walk away from its ethical duty to allow its staff to provide CPR or other non-invasive lifesaving care.