Important Facts About End of Life Care: Lessons from My Parents

Despite the fact that over 80% of Americans polled say that they wish to die at home, according to a 2013 study in JAMA, only about a quarter actually do. Perhaps more people would fulfill that wish if they were equipped with better knowledge.  

My mum loved the Dylan Thomas poem, “Do Not Go Gentle into that Good Night.” But both my parents did go gently and I am grateful for that: they both ended their days peacefully at home, surrounded by family. There are benefits to the choice they both consciously made: studies have shown better quality of care among those who die at home and less grief and prolonged bereavement among family members of the deceased.  I do feel that in our family’s case, home hospice let us focus on the important stuff–grieving and loss and how to reimagine our lives.

But to make that happen, we had to seek out the input of my parents’ doctors and social workers; and this knowledge was an important part of making their passing as comfortable as possible. What follows is a list of things you or a loved one facing a terminal illness will want to give some thought to if you wish to arrange hospice at home or hospice support at an assisted living or nursing home.

1-A Health Proxy (and it must be “activated” by the primary care doctor);

2-A primary care physician  (PCP);

3-MOLST  (or Medical Orders for Life Sustaining Treatment) form, also known as DNR and DNI–must be signed by you and your PCP;

4-Hospice Care or VNA–you must get an order for this from your PCP;

5-An Advocate–can be a family member.

• A Health Proxy

Who needs a health proxy? Anyone over the age of 18–that means you, your kids, your parents–almost everyone, in short. If something happens to your college sophomore and he or she lands in the intensive care unit, due to HIPAA protections, the hospital may not share ANY information with you about your child–and you will not be able to speak for them. The online form for Massachusetts can be found here.

How to choose a Health Proxy?

I often share this video  about how to choose a health proxy with patients who are wondering how and whom to ask. It is produced by the Coalition for Serious Illness Care, founded by Dr. Atul Gawande; the Coalition, along with the Conversation Project,  has done yeoman’s work to draw attention to the need to designate health proxies.

If you are the health proxy for a friend or relative and judge that your relation would like to pass with home hospice but they are not in a position to make known that wish, the health care proxy must be “activated” by the patient’s primary care doctor, who must determine that the patient is no longer able to make independent decisions.

• A Primary Care Physician  (PCP)

Developing a positive relationship with your primary care physician and taking the time to discuss your wishes regarding end of life matters is key. One colleague of mine advocated for “Sylvia,” a patient with end-stage kidney disease who wished to withdraw all care; she no longer wished to pursue dialysis, and was rapidly losing ground to her terminal illness. Her physician, however, refused to sign the MOLST form.

You can potentially prevent such a situation by discussing your wishes early with your primary care doctor (PCP). Your PCP is a critical player in so many ways, and this is a huge one; you want to be on the same page here. 

You will want to discuss things like: is this a terminal illness? What are the treatment options? What will happen if I decide to stop any major medical interventions–what will that look like for me? Everyone has a different vision of what they can live with, and how and when they would prefer to end their days. One senior physician I worked with once said that he would like to be kept alive no matter what: even if he were paralyzed from the neck down and could only live attached to a ventilator and could only drink from a straw–as long as his brain functioned, he would never pull the plug, so to speak. In talking to his dad, Dr. Atul Gawande determined that was not at all what his father envisioned: he wanted to be able to sit around the dining room table and socialize with friends. If that wasn’t an option–he was done. My parents were adamant that they never wanted to be kept alive on a ventilator, or resuscitated with chest compressions–they wanted to allow natural death when medications were no longer effective for their illnesses.

 These are important things to discuss with your doctor and health proxy; and it is important to know also that these choices may be changed or amended at any time.  

• MOLST  (or Medical Orders for Life Sustaining Treatment) forms, also known as DNR and DNI

As part of that good relationship with your primary care doctor, you will, when appropriate, want to draw up a Medical Orders for Life Sustaining Treatment or MOLST form –which includes “Do Not Resuscitate and Do Not Intubate” (DNR and DNI) orders– and discuss it with your primary care doctor. To be valid, the form must be signed by both you and your physician.

The DNR order can vary state to state–so make sure you have a valid one for the state you live in or spend a lot of time in, and a health care proxy who can speak for you and attest to your wishes (the health proxy is valid in all 50 states).

• Hospice Care or VNA

It can be tremendously helpful and reassuring to have hospice care and/or VNA involved in the context of  a terminal illness. In my mum’s case, we reached out to Good Shepherd, a hospice well regarded in our community and recommended to us by Lundberg Health Advocates’ social work consultant, Sharon Novie Greenberg, MSW–who also let us know that an order for hospice from my mum’s primary care doctor was necessary to set this process in motion.

Hospice can provide end of life care either in the home, at the hospital or in the context of an assisted living or nursing home. The medicines they supply make breathing more comfortable and will decrease pain, if there is any, at the end of life. They can also pronounce a death–so no need to call 911.  

It was not always thus. “Josie” had to call 911 to pronounce her mother when her mum died peacefully at home after a long fight with cancer–and it felt like a terrible intrusion, with fire engines blaring, and the firemen sweeping her aside when they came into the house. 

“Bob’s” father died in the hospital; Bob was waiting for relatives to arrive to say their good-byes –but he was told by hospital staff that they needed to remove his dad from the room because the hospital needed the bed. Interestingly, there are studies that show that families that experience a family death in the hospital grieve more and longer than those whose relatives die at home; perhaps it is situations like this contribute to that statistic.

An important caveat: make sure that the hospice you choose is in-network for you. One patient I advocated for opted to go with hospice, and after the one hour intake, discovered that they would have to pay $100/day–while another hospice service was in-network and had no co-pay. Better to know that before you have invested time and effort bonding with a hospice team. Your loved one may be in hospice care for many months, and this can represent a considerable expense.

Other important facts about hospice: hospice care can supply a visiting nurse–but only for an hour a day. So you will need to organize additional help if needed. That additional help may be expensive–but it is important to compare that expense to the cost of a hospital or nursing home. Hospice can also supply equipment, like a hospital bed–this was tremendously helpful in my mum’s case; she had end-stage Parkinson’s and found sitting up exceedingly difficult. My brother had the hospital bed set up so that she could look out the window at the trees and garden outside.

Another important note: hospice does NOT mean that your loved one has to stop all medications–in fact, that can be very harmful to a patient, if he or she goes into withdrawal, for example, from a given medication. One colleague of mine told me about taking in her mother in-law, “Peggy,” and engaging home hospice because Peggy wished to die at home; but the family was told (erroneously) that Peggy  had to discontinue all medications. Peggy’s behavior became so angry and erratic that they ended up sending her to a nursing home, where she died a short time after. Only later did the daughter in-law realize that Peggy’s erratic behavior may have been precipitated by the abrupt discontinuation of her medications.  

You can discuss medications and what you feel the indication is for each one with the hospice provider. My mum, for example, had extensive anxiety: so she was allowed to continue both her Parkinson’s medications as well as her anti-anxiety medications so she would not experience an intense and unpleasant withdrawal. Continuing them did not prolong her life, but it may well have avoided the serious side-effects of withdrawal.

And finally, if your relative has not enlisted the services of hospice and then dies at home, it is necessary (in Massachusetts) to call the police department, who will then contact the medical examiner. 

And a Few Other Important Details:

• Communication with all staff

If your loved one lives at an assisted living or nursing home, discuss your wishes with all support staff, including the nurse, if there is one, and resident manager. “Joan” had the following unfortunate experience: after  family and her primary care physician had decided to contact hospice, a staff member who was unaware of the situation came rushing into the room and told the family to call 911 and take their loved one to the emergency room. When the hospice team arrived, they noted that they were not often called to help patients at that assisted living– the attitude of that staff member clearly had a negative effect on many families’ decisions. Fortunately, the nurse at the assisted living completely supported the family in their decision, as did the patient’s physician: but if the family had not had been supported through their advocacy, they may have caused Joan needless distress by putting her through an unnecessary emergency room visit. “Do not go to the emergency room,” Joan’s primary care doctor told the family. “You have done everything you could.”

Good communication with all members of the support team can make things go much more smoothly, with less anguish for the family.

• Aides

If your loved one has aides or needs help during the day, realize that their needs may evolve over time; the aide who was helpful early in an illness because they were a fun companion may be completely unsuited to end of life and may know little to nothing about caring for your loved one as their needs escalate. A continuous assessment of that match is a great idea. A good assessment of patient needs by a visiting nurse agency or hospice can be very valuable to know what kind of support your loved one will need to safely navigate at home in the context of a terminal illness. 

• A Funeral Home

If it makes sense financially, choose a funeral home that is close to you–you will need to ferry back and forth after your loved one dies. One family was told by a hospice team about a home that was 40 minutes away; the LHA social worker let them know that there was a much closer one about 5 minutes away. That is an important consideration for an exhausted, grieving family. Another consideration: you will also want to identify one that respects any religious rituals that are important to you.

Would an Advocate be Helpful?

An advocate can help support your discussions with family and with your doctor around end of life issues and help you organize your advance directive documents so your wishes are known. These conversations are too important to delegate to someone else: make sure that you have spoken with your or your loved one’s doctor directly–preferably with a supportive relative in the room (virtually or otherwise).

In Short

• Think about this early–many families wait too long, and there is no time to seek the support of hospice;
• Talk with your or your loved one’s doctors about health care proxies and MOLST. You may need to take the lead! Don’t assume that a doctor will necessarily bring it up, even if your illness is in its end stages. Doctors often may not wish to discuss these matters any more than you do.
• Make sure you know what is required in the various states (or foreign countries) you or your loved one may be visiting in terms of documentation; MOLST forms vary from state to state, so you need one for each state you spend a good deal of time in.
• Keep a copy of all pertinent forms (MOLST, health proxy etc) with you and give one to your doctor and assisted living, if applicable. 

If you have read this far–you may be in need some sustaining thoughts; so I will leave you with this–a poem, of sorts, that sits on my desk:

Gaelic Blessing

Deep Peace of the Running Wave to You,

Deep Peace of the flowing Air to You,

Deep Peace of the Quiet Earth to You.

Deep Peace of the Shining Stars to You,

Deep Peace of the Gentle Night to You,

Moon and Stars Pour Their Healing Light on You,

Deep Peace to You.

**All names and identifying details have been changed to protect client confidentiality. The suggestions given here are not intended as a substitute for the medical advice of physicians. The reader should regularly consult a physician in matters relating to his/her health and particularly with respect to any symptoms that may require diagnosis or medical attention.